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If You Would Only Listen

By an anonymous mom

Yesterday, I ran across the email that I had sent to the clinician at the premier children’s hospital in my city. I recalled the agony of composing the email, explaining that my daughter was losing weight – and my fears about the possibility of an eating disorder. I felt lucky that my daughter had agreed to an appointment with her. An expert to guide me!

After the appointment, which was a mere few days after my daughter’s 18th birthday, the clinician called me. “No signs of an eating disorder,” she declared. I hung up the phone, looking up to see my daughter in the next room smiling. I tried not to look defeated, but she knew. She declined to eat dinner that night – and for many nights thereafter. The demon had been unleashed. 

If you would only listen…

After only a few weeks, my daughter’s condition had clearly worsened. I tried another avenue – her pediatrician. While confirming my fears, the discussions resulted in calls, faxes, and referrals. And waiting. Her pediatrician agreed to see her while we were anxiously anticipating the outpatient treatment program, but the visits were on telemedicine. She couldn’t see what I saw… my daughter wasting away in front of me. I called, asking her to admit her to the hospital. Movements were slow. Her clothes hanging off her body. Sure, she was still eating, but it was so little… “She won’t get in trouble, unless her weight drops to X,” she explained.

If you would only listen…

I could see the disease in her eyes. Twenty pounds lost in a matter of only weeks; the rapidity of the weight drop was draining her life away. I couldn’t wait any longer. I locked the doors to the house and told her that she had no choice but to get into the car. It was the worst ride of my life. Checking constantly in the rearview mirror to make sure she was still breathing between her tears and screams. I finally made it to the children’s hospital, where my husband waited. She refused to go inside, and he discovered there was a three-hour wait and determined to head home.

If you would only listen…

With my last ounce of energy, I convinced them both to go see a pediatrician to get her vitals done. They complied, and she was immediately referred to the hospital. I rejoiced. It took 13 days in the hospital to stabilize her, with her heartbeat plunging to the low 30s at night. My husband and I were now on the same page; she was very sick. “The highest level of care,” they recommended. We were shuffled into a room, and they gave us slick brochures. 

After determining that her age was difficult for many treatment centers; only weeks away from being an adolescent, but technically an adult… We landed upon a small satellite facility of one of the nation’s largest residential treatment centers. Thank goodness. The experts would save the day.

The days went by. We visited nearly every day. There was no family-based therapy offered. We didn’t know to ask. I started to notice her cold hands… and white skin. I called the facility to inquire about her status. It had been four weeks, and we had no idea what was going on. We had hired the experts, paid thousands of dollars. They knew what they were doing.

Someone finally called me back. I learned that she had lost a significant amount of weight; in fact, her weight was now less than it was upon admission. We frantically called the pediatrician’s office, and they agreed to see our daughter. We picked her up at the treatment facility, whisking her away. Crying and screaming. She was immediately referred to the hospital, now much sicker.

The treatment facility refused to send her medical records to the hospital, declaring that it was a holiday weekend. I had to drive over and retrieve them myself. Four days later, I had them in my hands – and I realized what had happened. When they admitted her, they logged the wrong weight and height.

If you would only listen…

A few days into the hospital stay, she was barely speaking to us. She called the director of the treatment facility from which we had removed her. He asked her when she was going to return. She informed him that we would not let her come back. He coached her how to emancipate herself. He explained the ins and outs of privacy laws and records releases. Following his instructions, she did just that. All we could do was remain vigilant outside of her hospital room, with her refusing our presence. Her friends called us to ask about the declaration of her so-called “emancipation.” No one understood what was happening. 

If you would only listen…

The next stop was a treatment facility across the country. A reputable one. By this time, we knew that her medical condition was dire. They would surely take care of everything. They did not, and neither did the third facility she flew herself to. After noticing signs of distress… the cold hands, the white skin… I sent messages to the treatment team to please make sure they watched her closely. Our daughter wouldn’t let us speak with them directly, but that didn’t stop me from sending emails. 

If you would only listen…

Out of the blue, I got a phone call from the treatment center that our daughter had left. I was so surprised. The therapist explained that she had violated a house rule. The next words out of her mouth, however, made my heart sink. She had been weighed that morning. A random weight – the first one, her therapist revealed, since she arrived six weeks prior. The scale, the therapist explained, was broken. Her weight was way too low. They were going to get it fixed that day. I knew better.

If you would only listen…

During the six months that our daughter was in the hospital and treatment centers, we had found FEAST. We had found a support group. We had found a local coordinated team. We had found parents of other survivors. We knew our daughter had a neurobiological disease. We had found knowledge and strength. 

And so, this time, I listened to myself.

We started family-based treatment. She resisted. Food. Daily appointments. More resistance. More food. Back to the emergency room. Anger. More food. Weekly medical checks. More food. Family therapy. Frustration. Food. So much food that her stomach hurt all the time and she slept half the day. Food. I pressed on. More food. She resisted with all her might, but I knew that I was the only person who could stop the disease. It gave me unimaginable strength, even in the darkest times. After months of refeeding, slowly but surely, my daughter started to come back. The laughter. The vulnerability. The joy. The empathy. The love.

How I wish that someone had listened. I believe that our journey would not have been so difficult. She wouldn’t have gotten so sick. 

In the end, however, I stopped asking the question of others. I listened to the experts, but I found the strength to ask it of myself. And this time, I listened. Because I knew how to save my daughter from this disease… And I did.

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  1. SUE

    Wow this is so true & heartbreaking at the same time. Just because we don’t have medical degrees does not mean we don’t know what we were talking about. It only people did listen, sadly only some do.
    My daughter relapsed this year & would have died if I had not rushed her to hospital. I had been trying to tell her care team for months bur no one listened or would talk to me as she is an adult.
    Well done to everyone battling this disease, always trust your instincts.
    No one knows your child even adults better than you.

  2. Emma

    So happy for your daughter and family that get through these difficult times. I have similar experience and I can totally relate to you. As a parent we know when the treatment works and when does not. We just need to trust our intuition. Thank you for sharing

  3. Richard

    Well done mom for standing strong and saving her life. It’s such a hard and stressful road and all the betrayals of the so called experts and (un)professionals who have their own theories but no lived experience or real understanding of what we go through.
    Thank God my daughter is still 15 and I can still insist on seeing her weights, but I’ve had to pretty much fire the hospital appointed team whose advertised approach I’d FBT because that’s not what they’re doing, and are focusing just on talk therapy, which resulted in a 4kg weight loss.
    The hardest challenge is every medical person, from Doctor to health nurse doing the weighing, looks at her and says she’s healthy and pours on criticism for my controlling behaviour.
    Thank God for the voices of FEAST. Thank God for FBT and the knowledge I’ve gained on this journey to make it happen. Flying solo is so hard, but my girl is well into her recovery but staying the course to full recovery is a battle!
    God Bless you all for saving lives.

  4. Danielle

    I’m so glad that you found the strength to listen to your gut and that your daughter is well. I relate with every word in your paragraph about starting FBT. After 5 years my daughter is recovered as well, thanks to FBT, wisdom of the caregiver community, a handful of professionals and listening to my gut.

  5. Viktoria

    Thank you for sharing your story! I am so happy for you and your daughter. My daughter and I had similar experiences on her journey to recovery. She is fully recovered now at 22. When she was 13 and started rapidly losing weight due to food restriction, I took her to a pediatrician, who reassured her that she was just fine with her low body weight and borderline blood pressure. She said, “I wish all of my patients were like that!” Once we also met an “expert” who assured my daughter that her primary amenorrhea (never having a period after the age of 14) was normal and in fact desirable because periods were “toxic.” How happy her AN was to hear all that! In one of the residential treatment centers she was not allowed to have an extra serving of refried beans because they said this was too many carbs… really? For someone who was emaciated and desperately needed food? When my now recovered daughter and I reminisce about those experiences, we sometimes wonder how we even made it on the other side despite of all this. My heart goes to parents who keep fighting for their children. Please know that full recovery is possible and never give up!

  6. Jo

    Thankyou for sharing , our daughter is almost 19 and was diagnosed over a year ago but looking back we are coming up to 2yr . It’s been hell for all the family . She became weight restored in jan 22 but as soon as she was transferred to adult team she went backwards and relapsed . The team would not listen and let her make her own decisions and would often ask her what do you want to do .. I could go on and on but it’s exhausting and even when I knew Anorexia was strong no one would listen so it took until she collapsed and she was then transferred to a special adult eating disorder team . Life is hell for all , I struggle to cope with the lies , I have struggled to cope that my partner has taken too long to get on the same page and has often sided with Anorexia and challenged me about my knowledge considering I have researched everything and he has researched nothing . I don’t feel like there is any hope .. I did , I fought I got waves of “we can do this” but not now . I am so down trodden and feel like we are being emotionally abused , everything revolves around her .. our feelings don’t matter , she says they do but there is no empathy there and it’s said in an aggressive manner . I have almost forgotten how she was before this disease I feel like I can’t remember her and this is now “her” . I want to believe so much that she will get better but I really can’t see any light at end of tunnel

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