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We Made A Mistake

By Meaghan

We made a mistake.  A grave one.  And it almost cost our daughter her life.  My husband and I learned what we could from our mistake and hope that it can serve as a guide for other parents.  The mistake was allowing our daughter to begin her freshman year of college with what was obviously a quietly out of control eating disorder.  We didn’t know what we didn’t know – and that lack of knowledge could have been fatal.  Here is what happened.  

In late Spring, 2020 our daughter, an 18-year-old high school senior, began running quite a bit – always an athlete and often a runner, we did not think anything was unusual.  It was the height of COVID quarantine in our area and we were all looking for ways to get outside and move.  In June 2020 it was obvious that there was a problem.  We brought her to 3 MDs and she began seeing a therapist.  They all said the same things: “don’t worry”, “she doesn’t have an eating disorder – just ‘disordered eating’”, “keeping her home from freshman year of college could actually create an eating disorder”, “she ‘looks’ fine”, “She is working at her summer jobs and excited to go to college, let her go”.  

As I said, we didn’t know what we didn’t know – that over exercise is a form of purging, that any weight loss in an otherwise healthy young adult likely means there is an eating disorder, that food is medicine and someone with an eating disorder has to be made to eat and that the medical community is woefully uninformed about eating disorders.  We thought we could trust the doctors – one of whom had been our children’s pediatrician for 25 years.  And we heard what we wanted to hear – no eating disorder, send her to college, everything will be fine.  But we knew – in our hearts we knew there was a problem.  We ignored the obvious signs and our gut instincts, trusted the doctors, and allowed our daughter to go to college, with an eating disorder, in the middle of a pandemic, very far from home.  

Things got worse.  Much worse.  I constantly monitored my phone for calls and texts.  We face timed often.  She said she was eating; she had a flat with roommates and cooked often (she sent pictures), frequently asked for recipes for her favorite foods and purchased groceries (we saw the credit card bills).  Again, we didn’t know what we didn’t know – that eating disorders lie and that cooking for others is an eating disorder behavior.  

We brought her home after 2 months – near death and terrified.  At this point we still didn’t understand eating disorders – we didn’t know what FEAST was, what FBT was or any of the steps to recovery.  But intuitively we knew we had to feed her, so we did.  And we were lucky to find a medical doctor who understood eating disorders.  This doctor admitted our daughter to the hospital on the day of her first office visit.  She spent 4 weeks in the hospital, 14 weeks in residential treatment, 8 weeks in virtual PHP (partial hospitalization program) from our home.  I don’t have to tell anyone reading this the level of suffering she endured or the level of anxiety and fear that we felt.  A lot of that could have been avoided if, instead of sending her to college, we had started her on the road to recovery.  

By the end of May 2021 our daughter was weight restored+; was eating all foods in all circumstances; was able to eat through two serious family crises; and all eating disorder behaviors were eliminated.  She was re-engaging with life and she believed she was ready to go to college.  To the outside world, I’m sure that’s how things looked.  And yet we told her that we would not pay for her to return to college in September 2021.  Because this time, we knew.  

We knew that college is a vulnerable time for anyone, but especially for someone with an eating disorder.  We knew that she needed at least 6 months of a strong recovery before it would be safe to return to college; that she needed more time for her brain to catch up with her body; that she needed more time to refine all of the hard-won accomplishments of the previous 6 months and that any experiences she had in college would be diminished if the eating disorder was still present – even if it seemed like it was just lurking on the periphery.   

She was not happy with our refusal to pay.  She is 19 and of course can make decisions for herself.  Rather than imposing an edict (“you can’t go to college in September 2021”), we told her that she could go to college, but that we would not pay until we believed she is ready.  Practically speaking this meant she could not go.  However, I believe that our language was more than just semantics and allowed her some degree of agency over the decision.  

For us, readiness looks like the following: for at least 6 months before going to college our daughter must: (i) be weight restored plus; (ii) be able to eat ALL foods in ALL circumstances (e.g. at home, in restaurants, with other people, in large settings, in small settings, in stressful situations, in a rush, during a leisurely meal, putting a meal together with whatever is on hand, planning a meal etc..); (iii) have eliminated all eating disorder behaviors (e.g. restriction, purging, excessive exercise, self-harm; and (iv) be able to eat a meal in a normative time frame, without fidgets or the need for distracting games. 

When she returns to college, we will have a written agreement in place for her entire 4 years of college.  (We have one in place now that sets out terms for living in our home, so the concept is familiar to her).  The terms of that agreement will be: (i) weight checks (weekly at first and then less frequently as the years progress); (ii) continued access to her medical team and records; (iii) video calls at specified intervals; (iv) periodic in person visits; (v) a short specified time frame to restore minimal (and specified) weight loss; (vi) immediate return home if weight loss exceeds a specified amount.  

An eating disorder forced our daughter to delay college for 2 years.  She is on track to return in September 2022 – as a 20-year-old freshman.  She has been out of the loop with friends and life experiences for a long time.  And frankly, none of that matters.  Because when she does return to college, she will be recovered. And she will have the life she was meant to have.  To get to that point, she had to do all of the hard work required to recover.  And, she needed the gift of time to solidify that work. 

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37 Comments

  1. M G

    Thank you for sharing this. As a mom of a HS senior, who keeps talking of “wanting to get away from home and go to college and all will be good/easier/better,” this confirms what I know if my heart to be true & NECESSARY.

  2. Danielle

    This is a great post! We are also looking to see if our D will hit all the marks for the next 7 months to see if she’s ready to start college in Fall 22. I really like how the author points out following situations in particular as times when our loved ones need to be able to eat:
    in stressful situations, “in a rush, during a leisurely meal, putting a meal together with whatever is on hand, planning a meal etc.”

  3. Oona Hanson

    I’m so sorry your family had to go through this and that your trusted doctor didn’t know enough to catch this earlier. Your criteria for her return to school are so clear and so wise–and will help many other families in this situation.

  4. Maria Sullivan

    All too familiar. She is so fortunate that you are strong and able to see the big picture. Great job sticking to your guns! I am giving a talk on ED at my church soon and will reference your article. Thank you.

  5. Michelle

    Thanks for sharing this definitely sounds so familiar unfortunately my daughter was in middle of her university degree and paying on her own and still struggling as she now working on her second degree. Her education is what helps her stay grounded she says. Not sure how to help her my heart bleeds daily

  6. Mary

    Good for you for taking control of this illness and protecting your daughter from the long term agonizing and destructive illness. Wish I had been that strong when our daughter was diagnosed with AN at the age of 12 she would likely still not be suffering with this illness 15 years later. Our daughter did go to university, took 1 yr off and recently resumed school, she eats more but also exercises daily. It’s a tough illness for the individual and those who care most

  7. Kerri

    Thank you for sharing your experience. I am wondering if you would be willing to share the agreement that you put in place (requirements for living in your home)? Or at least some of the items included as an example. My daughter is 15 with AN and school is one of the most important things in her life and in her future life, but she is struggling with recovery.

    • meaghan

      Hi Kerri, I am happy to share the basic terms of the agreement. I think you will see that there really isn’t any magic to the terms. Just think about what will help your daughter recover and what will work for your family. The strength of the contract is that it is in writing, signed by everyone and can be referred to in moments of stress or forgetfulness.
      For us, the contract became “the bad guy” – by that I mean if there was something that needed to be addressed, we simply pulled out the contract and said, well, the contract says we are supposed to supervise meal prep, end of story. It really took the negative emotions out of potentially inflammatory situations. And it was helpful in the case of “selective memory”. Finally, please note that I am including the terms as they existed when she was discharged from RTC over 10 months ago. There have been significant modifications based on her progress. With that said, here are our terms: (1) eat 3 meals and 3 snacks a day; (2) at discharge from RTC, our daughter was allowed to prep breakfast and lunch but only with our supervision; (3) eating all meals and snacks must be supervised; (4) provide written releases for all members of clinical team so that they can speak with us; (5) attend all appointments with dr, therapist and dietician; (6) not engage in any ED behaviors – if we discover ED behaviors (eg purging or SH) we will talk about it first and then our daughter will notify her team immediately after our discussion, we will follow up with a conversation with the team; (7) weight checks at stated intervals; (8) not isolate in her room; (9) no exercise other than gentle walks with the dog, subsequently modified to allow for joyful movement and then more extensive exercise, with a requirement that she nourish herself appropriately. I hope this helps.

  8. Jen

    This is so helpful. My D17AN is set to graduate in June 2022 and wants to go away for school. I am going to use your guidelines for her ‘readiness’ to do so, so that we’re on the same page about exactly what that means. I truly appreciate this post.

  9. Wendy Ferguson

    The Covid roller coaster is itself an enormous stressor, especially for fledgling adults trying to live independently for the first time. Your daughter will be amongst many students who’ve taken unexpected paths this fall. The strength and vision you have developed are what it takes to walk a child through this harrowing illness. Keep on keeping on!

  10. Lisa Stein

    This is my mantra. In a way we were lucky because Covid shut down the end of high school and the first year of college on campus for my D. She moved out a year after weight restored with 9 months of strong eating. She made more recovery progress the next semester among friends. Last semester was the first in person on campus and was so messy. But because she was in recovery she was able to deal with the messes without ED. Her college is 2 hours away and I still check on her in person often.

    • meaghan

      College and EDs are such a tricky mix. it sounds like your daughter is navigating the issues successfully. Best of luck to her and to you.

  11. Patricia Barnett

    Thank you for posting this very important article, and for your courage and wisdom in the difficult process of guiding your daughter’s recovery. We allowed our daughter to enroll in college when she was suffering from severe bulimia. She took her life a year later.

  12. Wendy Kadushin

    Thank you for this powerful piece and perspective. Im going to print it out and use it as a guide for my 13 year old 8th grader who hasn’t stepped foot in school since Nov 2020 due to illness, ED, dep/anxiety, and numerous hospitalizations (ED RTC, psychiatric admissions). Thank you for sharing your journey.

  13. Dulce Petagara

    Thank you so much for sharing your lived experience. It is a powerful piece! As parents, we really “don’t know what we don’t know”. And, it is so interesting how our hearts tug at us to keep at it until we figure things out. Well done!

  14. Debbie Sutch

    This is hugely helpful thank you. Gets things into perspective for me regarding our 15 year old who has an eating disorder. The gift of time is a powerful message.

  15. LB

    Incredibly insightful. I am reading and weeping from a hospital room where my 12 year daughter is admitted for refeeding and medical stabilization before we move into residential inpatient treatment, albeit a waitlist. It is so easy to miss the signs and rationalize changes in disposition, eating and exercise habits, etc. and before you know it things are out of control and you forget how you got there. It reinforces parents in the thick of things to keep up the fight from others who have been there or are there.
    Thank you for your story and reminders. This is an exhausting fight and one to constantly be vigilant about, but oh so necessary and worth it!

  16. Miao Gong

    Thanks for the agreement.
    As my 12 yrs daughter is a competitive swimmer, she is having the very similar situation with your girl, COVID ruin her routine, and excessive exercise with loss weight. Swimming used to her middle name, later on it is a way to burn calories.

    My GP was not very helpful as well, we are luckily advised by an after hour emergency doctor, to seeking help at hospital.

    I am writing the comment at a hospital room, this journey is not easy but I believe we will get there.

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