5 Lessons We All Need Right Now from My Daughter's Battle with an Eating Disorder
Image above is a photo of an "altered book" that was my daughter's art project during her recovery. You "alter" an old book by making each page a separate collage or painting.
This article was originally published in 2021, during the global pandemic. The lessons are as relevant now as ever and I hope will be a blessing to families dealing with health crises of various kinds.
Years ago our daughter's life, and our family life, was side-swiped by a diagnosis. I remember sitting in the doctor's office, the news her resting heart rate was 40, the amount of weight loss. Time stopped and everything fell away. How could we have missed it? How could we have let this happen?
What happened over the next year, what we learned, might prove helpful as the impact of the coronavirus strikes from seemingly nowhere and flips all our lives over.
Build a Team of Experts--and Do What They Say
Similar to when the coronavirus hit, we didn't know much about eating disorders. We felt completely unprepared, inadequate and incapable of meeting the challenge. And you know what? That's okay. Perhaps many of us feel we can "just Google it" these days. Some have spoke of the death of expertise, that we don't seek or trust actual authorities anymore. Well, we should. To literally save our daughter's life, and to save lives from the coronavirus, we needed to rely not just on a single expert but a team. For our daughter we needed the following:
- Doctor specializing in eating disorders
- Psychologist specializing in eating disorders
- Psychiatrist
- Nutritionist
The team was qualified, credible and in constant communication. They were prepared and capable, even if we were not. They were our "Dr Fauci." We held onto this team as a lifeboat for two years and still rely on them now, three years later.
Similarly, coronavirus demands a team of experts in a range of areas from infectious disease to epidemiology to public health. Let's seek their advice and listen to them.
And let me say one more thing on this: you don't get to have an opinion. Just listen to what they say and do it. You aren't qualified to make a judgement. Sorry but it's true. Just as with our daughter's life--and now peoples' lives--the future depends on you seeking the advice of experts and doing what they say.
You aren't qualified to make a judgement. Sorry but it's true. Just as with our daughter's life--and now peoples' lives--the future depends on you seeking the advice of experts and doing what they say.
Throw Everything At It: You Cannot Do Too Much
Our life had been like a nice game of Scrabble with neatly spelled-out letters for everything: church, faith, family, work, service, friends, etc. The eating disorder, like the coronavirus, upended the whole game board. All the letters clattered to the floor, spelling nothing. Nothing else mattered. Nothing made sense. Nothing could be done to make everything normal again.
My daughter needed to leave school and enter a special program at a hospital over two hours from home. Leaving friends and home was excruciating. It was called a "partial" eating disorder program which meant an all-day program with evenings and weekends with a parent or caregiver. My wife went with her and had to leave her teaching job at the university--and suddenly do everything online. Sound familiar?
Here's the point: we could have chosen to try to help our daughter at home. We could have done the minimum and hoped for the best. Actually, that is what we wanted to do: resist change, resist disruption and do the minimum needed to get her well. But instead, we decided--based on the advice of experts--to throw everything at this thing. That turned out to be the right choice and the hardest choice.
The initial 3 month hospital program didn't succeed at helping our daughter. We had to increase the intensity of care. She was admitted into an inpatient program in another state that didn't allow outside contact except for once a day. We had to leave our son (a senior in high school) at home and temporarily move closer to her. This was very hard on him. We were fortunate to be able to keep our jobs and work remotely, many would be unable to do so. It was the most painful period of our daughter's life--and for our family.
At every step, we learned from the experts and other families that it was impossible to do too much. Like COVID-19, eating disorders are incredibly stubborn and not easily overcome. Some never fully recover; others lose their lives. It is something to go after with everything you've got.
Like COVID-19, eating disorders are incredibly stubborn and not easily overcome. Some never fully recover; others lose their lives. It is something to go after with everything you've got.
Attacking the problem with everything we could find was a brutal experience, but necessary to endure to finally overcome the disorder.
For us, "throwing everything at it" meant:
- two hospitals
- a team of experts
- medications
- leaving our jobs
- leaving our son at home
- leaning on an incredible family, friend and faith community for prayer and many, many acts of kindness (meals, notes of encouragement, even mowing my lawn)
- and more
With coronavirus, you see many wanting to take an incremental approach, to do the bare minimum. With an exponentially growing problem, you cannot wait. In our experience, as soon as possible you must muster every possible resource and throw everything at the problem.
It is impossible to do too much. The most extreme measures soon become the minimum that should be done. Social distancing, staying home and helping those who can't: how can we push these interventions to the limit at this moment?
Educate Yourself (But Not Too Much)
Like many, when I first heard of "coronavirus", I thought of the beer brand. Since I live the United States, I first heard of cases in China. I remember reading about a hospital being built in six days to accommodate the infected. That seemed pretty serious. Similarly, when I first learned my daughter had "anorexia" I didn't have any mental files, any pre-existing knowledge, any language to rely on. I didn't know anything.
We must have read four or five books on the topic of eating disorders, consulted great websites like National Eating Disorder Association (NEDA), plus talked with many families and our daughter's team of experts. We were desperate, looking everywhere for information for helping our daughter. Educating ourselves had two effects: it made us feel more comfortable and capable ("we can do this") and also brought greater clarity to the expertise we needed ("we can do this...but can't do it alone").
We also learned you should not overwhelm yourself with information. In the end, ironically, you need to know enough in order to know you don't know enough--and therefore must trust the experts. But, being informed helps you ask the right questions.
With the coronavirus, it is worth taking time each day to learn what you can from trustworthy sources. Look for people with credentials and experience, people who have "been there, done that" or at least "been there, studied that for a long time".
I recommend sticking to the Rule of Three: read/listen to at least three articles/podcasts so you can take the average and control for any bias that someone might have. The CDC, Johns Hopkins and state and local health officials are good; social media is (mainly) bad.
Stick Together
Crises can shatter human relationships sending us into fight or flight mode, abandoning or attacking one another in sequence. We were all so worried about our daughter. The weight of it took all of our energy and attention, leaving nothing for relationships. Every day we felt we were operating in emergency mode. Code Red! Code Red! Every day.
The common courtesies of "please" and "thank you", the everyday greetings that secretly fill our emotional bank accounts, can all dry up. Like the empty shelves we see in grocery stores today, the internal warehouse of energy seemed always spent, always emptied of substance. The tendency is for all resources to be directed toward the crisis.
We had to leave our son at home and missed really celebrating his senior year in high school. This is a wound we all still feel. We had to split up our family.
But it was our larger family, friends, church community, and co-workers that held us together. We had people dropping off meals, raking leaves and even mowing our lawn. Coronavirus has neighbors meeting neighbors, families re-uniting, people and businesses finding creative ways to stick together and contribute.
This is critical. The energy of a crisis is to separate and to disintegrate. This must be countered with an equal and opposite force of unity.
The energy of a crisis is to separate and to disintegrate. This must be countered with an equal and opposite force of unity.
You Have to Believe in Something
My wife and I were relatively new Christians when we sat in the doctor's office and she told us our daughter had anorexia. Thankfully, faith doesn't have a freshness period or an expiration date. It is there in its fullness when you are there in yours. Right when we were falling, grace was there to pick us up.
Your faith gives you a safety net, a kind of unbreakable and unshakeable container within which life plays itself out. So the crises broke us down but not apart. The pieces did fall to the floor, but at least there was a floor and not just an open void.
Our faith told us and showed us we were not alone. Our faith community stood with us. Many prayer sessions, text messages of encouragement and sharing of scriptures kept our spirits uplifted. We also know that our daughter's faith grew during this time. This is actually amazing. Some in crisis turn away from faith since the Creator or Higher Power seems against them. Thankfully, our daughter was one of those who strengthened her faith, building daily habits of journaling, prayer and reading that continue today.
My hope is that the coronavirus causes us all to ask: "what do I place my faith in?" And to consider leaning into a faith you might have strayed from or invest in one that has been calling out.
Epilogue: We Never Got Back to Normal...thank goodness!
When it was all over, our faith was stronger, our family was stronger and our community was stronger. Our daughter is now doing quite well and most of the original team remains in place: doctor, therapist and psychiatrist.
I hope we experience the same after we get on the other side of this thing. Many will have lost loved ones and our economy has been brought to its knees.
During our daughter's incredibly brave and heart-wrenching experience, we longed to "just get our daughter back" and return to normal. Coronavirus has the world praying for the same thing: a return to normalcy.
In our experience, such disruptive trauma removes any possibility of returning to how things were. After all, "how things were" is what played a part in creating the conditions for the crisis. We never got back to normal and we are thankful for that.
Our daughter went through a metamorphosis at the hands of a deeply painful experience. She emerged with unmatched moral courage, intelligence, and compassion. And we changed too.
I suspect our country and our world has a similar path ahead. Hopefully we won't go back to normal and we'll be thankful for that.