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You Don’t Know What You Don’t Know

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.

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24 Comments

  1. Jennifer Aviles

    This is such a valuable account! That indeed as the previous writer wrote is pure “gold.” Believe what Neveen Radwan writes here. And advocate for her!

    Believe me when I say many uneducated doctors and psychiatrists will NOT believe that your daughter or son has a brain so malnourished that their brain has been hijacked. And I say this for my daughter who was time and again discharged because the medical staff had rather poor observational, clinical, and listening skills.

    Learn as much as you can. Again, what Neveen writes here is TRUTH!

  2. Dahlia Eltoumi

    This article is filled with pearls of knowledge.

    Thank you for sharing your journey in hopes of helping others while coping with so much yourself. ❤️

    Praying for your daughters health and a complete recovery.

    • Lynn

      This was like reading an article written by myself.
      I too fell into the believing that my daughter could be trusted, much as I had before the ED. It’s a terrible pitfall! She will say or do absolutely anything to reduce her food intake. We are now on 3rd hospital admission and looking at a second residential stay.
      I thought I’d learnt a lot last year, but I’m still learning how manipulative this illness is!!

  3. Dawne Badrock

    TOTAL TRUTHS. Couldn’t have said it better. Thank you for writing it down. Best to take all that to heart and avoid learning it yourself the hard way.
    We are 26 months from discharge and I am still quite vigilant. My girl is about to turn 16 and I have given a pass on “being recovered”. What with the emotional ups and downs of being a teenager, boys, and prickly girlfriend relationships, I go day by day and be grateful she is still fighting. These kids are required to fight so hard, the ED is a ruthless, opportunistic being.

    • Neveen Radwan

      Yes. People think she’s “cured” a week after coming home. In reality, every day, we are closer to relapse than recovery. Prayers for all our children 🙏🏻

  4. Susie

    Thank you Neveen. It is so helpful to know what to look out for. A year into our journey and we are still learning every day. Appreciate you sharing.

  5. Anna Bernardo

    This is very true. My daughter suffered from it when she was 12. We did the Maudsley approach for a year. The ED is a horrible monster, but know that with persistence , you will win your child back. My daughter recovered but I keep a close watch on what she eats and her activities . She’s 21 now. Thankfully, no relapse.

    • Elizabeth

      Sounds totally familiar unfortunately.
      We are just receiving Pans/pandas diagnosis which we’re hopeful will fight the irrational OCD rage monster which has shown up throughout.
      The devious behavior is tough, my husband and I fight over intent as he doesn’t see the demon distinction as I do and you explained above.
      May we guide the return of our daughters out of the cruelty.

  6. Diane

    Neveen, your description of your daughter and your family’s experience of ED sounds so similar to ours, in that I would never have believed that my sweet, loving, beautiful daughter could lie, scream at me, break my kitchen faucet, and turn her back on me, refusing to talk to me for days. Thanks to the wonderful parents on the Around the Dinner Table Forum, I knew that this was the behavior of ED, not my daughter. ED saw me as the enemy and treated me as such. It was heartbreaking to experience, and I feared that my relationship with my daughter was ruined forever. However, it has now been years – 12 years since my daughter developed ED. ED is long gone, and my beautiful, sweet, loving daughter is, if anything, sweeter, more loving, and lovelier than ever.

    I hope that all parents beginning the struggle with ED heed Neveen’s lessons, and remember that when your child recovers, the child you knew before ED can return – stronger. Blessings to all of you.

  7. Nina B

    Thank you for writing that. It will help many many parents. I was like you, never believed my daughter would lie, hide food, etc. I have also learned the sooner you hear to your mother’s gut that there is something not right, address it full force. Easier said once you have met Chucky (that’s what we named her ED). It is so hard for a parent in the beginning of an ED to see the real Chucky. It is so hard to believe your child is lying to you. It took us 3 months to understand and really see what we were dealing with. And one very important thing to realize, Chucky tries to split the family to conquer it all. Do NOT let the family unit be fractionated. This is when you need EVERYONE to be on the same page and form a United front to fight this horrible enemy.

  8. Jennifer

    The beginning of your story was EXACTLY my daughter. Very athletic and active. When Covid hit there was all this talk (and jokes) about how we would all just eat and get fat. My daughter would have none of that. She started “eating healthy”, then exercising more and more each day. Lost over 30lbs in a matter of 2 months and she was trim to begin with. When you are with your child every day you don’t notice the struggle right away. We are very close and I had no clue how bad this would get. My senses were tingling but when a friend mentioned something that is when I began calling doctors and health care professionals for help Even took her to Emerg to escalate getting into the Eating Disorder clinic for treatment Luckily we did not have any hospitalization but feeding her at home was horrible. Dad was in denial so I did everything myself. I am now a single parent (not because of this but many other factors) That was almost 2 years ago and we are still going through the motions. Still no period but her eating has improved as has her mental health. She is also taking anxiety medication which has been a huge help. Boy do I remember those tough nights/days. Our battle is not over and not sure it ever will be. One day at a time. We have come so far. I pray each and every day not only for those struggling with the disorder but for all of those that live this battle day after day after day. Not just the parents but also the nurses and therapists that deal with this every day are truly undervalued. Thank you so much for sharing your story. Hold your head high – you have come so far!!!

  9. Melanie Young

    Never in my wildest dreams did i think that I’d be going through this trauma drama with my daughter. I loved being a Mom and raising my two were a breeze… until she was getting ready to get married at 24…. Everything went downhill and i went from enjoying Mother daughter time to pure abuse. I want to help her… but I haven’t had any success. Its hard when they’re not under your roof.

  10. Laurel

    Dear Neveen. This is exactly our experience. But, we did everything the family based therapist told us. 11 months since hospital and our girl is almost back. Just like your girl, she is polite and respectful. Delightful, high achieving at school and made the National team in her sport. Covid hit and BAM. AN made her unrecognisable but she is fighting the demon. She tells me everything now including 8000 star jumps a day when we are in the house with her! I tell her to tell the thoughts to ‘f$”% off’. I would never have spoken to her that way before but gloves are off with this evil illness. We are slowly winning, as are you. Love and respect to you and your husband and amazing girl.

    • Joanne Humston

      Happy to hear that FBT worked for you. May I ask, how did you get her to eat when she didnt want to? My daughter is soooo determined and now brazen!! She will sit at the table for hours and i know in my heart she will not eat it if she decides she wont. She spent 6 weeks in hospital and even the paediatrician was surprised as she would not eat the food and drank nutritional supplements– only to avoid the NG tube. thanks

  11. Joanne Humston

    Hi, Happy to hear that FBT worked for you. May I ask, how did you get her to eat when she didnt want to? My daughter is soooo determined and now brazen!! She will sit at the table for hours and i know in my heart she will not eat it if she decides she wont. She spent 6 weeks in hospital and even the paediatrician was surprised as she would not eat the food and drank nutritional supplements– only to avoid the NG tube. thanks

  12. stacy

    my 17 year old is currently hospitalized for ED and going through nutritional rehab program. This disorder is keeping her so sick she has been vomiting (unprovoked) at almost every meal they have had to tube her several times already to get the nutrition into her body that she needs. When i go to visit her she tells me how mean everyone is to her and how she can’t do this its too hard and she can’t get better here.
    I knew she was lying to me about not being able to eat the hospital food because it is “disgusting” when I (unauthorized) brought her a snack from the Starbucks across the street. I made the mistake of saying how many calories were in it as I was offering it to her and she declined eating even that!!!

    I was staying with her 24/7 for 4 straight days and basically interfering with the program they have in place because I was believing the lies her ED was telling me.
    Finally two days ago the psychiatrist asked me to go home and let them deal with her because me being there rescuing her was not what she needed. I needed to love her enough to walk away so the team of doctors and nurses who specialize in this can help her where I can’t. She doesn’t understand why I had to leave and is calling and texting me to come get her and if i loved her i wouldn’t have left etc…

    This was a very difficult decision.
    we meet with the medical team tomorrow to discuss the next steps.

  13. Kristy

    This scares the crap out of me… we are in the beginning stages of this horrible disease with our 17 year old daughter. God bless these therapists and dieticians and psychiatrists that put so much effort into our children.

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