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.