Around five years ago, I tripped and fell directly on my left shoulder, which caused a serious break requiring surgery. I was incredibly fortunate to have found not only one of the most highly skilled orthopedic surgeons in Israel, but one of the nicest doctors in the country to boot.
After repairing the break, my orthopedic surgeon continued to assess and evaluate my recovery by performing repeated examinations and X-rays. After I had regained an almost full range of motion in my damaged shoulder, and the X-ray showed that the broken bone was fully fused, I was declared healed and discharged from his care.
As I was leaving the doctor’s office, thrilled that I was recovered, but a little sad that I wouldn’t be seeing him again, I thanked him for taking such incredible care of me and I praised his outstanding surgical skills. I told him that in the weeks and months after surgery, when my range of motion was so limited that I could barely move my left arm, I never imagined that I would regain full function. I continued to compliment his surgical proficiency and to offer my effusive and heartfelt gratitude.
When I was finished, the surgeon smiled at me and said, “It was all you.” I was dumbfounded and asked, “What was all me? You were the one who repaired my shoulder!” He answered, “Yes, but you believed from the outset that you were going to make a full recovery, and you weren’t willing to settle for anything less. It was all you.”
I have been thinking about this story as I am preparing a presentation about eating disorder recovery for the International Conference on Eating Disorders in April. I seem like an unlikely person to speak about the topic of eating disorder recovery, since my daughter is more than 10 years into her illness and still not recovered. I started to panic about what I would say on this topic since I don’t have any lived experience about eating disorder recovery to contribute. Simply put, I have no cred.
It is impossible to apply what I know about physical recovery to eating disorder recovery, since there is really no consensus among professionals about what eating disorder recovery looks like. It’s not like a broken shoulder, you can’t X-ray it to see whether the bones have fused. It’s not like a tumor, you can’t do a scan to evaluate whether it has shrunk or disappeared. To complicate matters even more, recovery doesn’t look the same for everyone, which makes defining eating disorder recovery that much more difficult.
As I started thinking about what I am going to say at this presentation, I realized that I have a lot to add to a discussion about eating disorder recovery, because there is much to learn from the narrative of parents whose children are not recovered.
It hit me like a lightening bolt that in the 10 plus years since my daughter started treatment for her eating disorder, only once did a professional reference the possibility of recovery, and that was around six years in. Other than that, no one has ever mentioned the word “recovery.” Recovery was notably absent from day one. It was never set as a goal, never presented as a possibility, never pushed in treatment, and never offered to us as a beacon of hope.
In fact, around two years into my daughter’s treatment, we were told by an excellent treatment team to give up on the option of recovery and to settle for functionality instead. This change in mindset was very helpful to us as parents in some ways, preparing us for the chronicity of our daughter’s eating disorder and shifting our energies to a goal that was more attainable. It gave us a “dose of reality”: focus on what was achievable and leave behind what wasn’t.
However, in retrospect, I realize that it also stole the hope of our daughter’s recovery. To the parents of a child with an eating disorder, hope is oxygen. It is what gets us out of bed to face another sucky day when all we want to do is bury ourselves under the covers and cry. It is what gives us strength to go on fighting our child’s illness, the energy to get through the worst of times, and the tenacity to hang in there for the long haul. Without hope, we cannot convince our children that things are going to get better; that they are going to get better. Without hope, both parents and patients are essentially doomed.
There is a legitimate argument to be made that dangling recovery in front of us would have been false hope, and that false hope is cruel. However, on the flip side, I would postulate that crushing hope can be just as cruel, especially when hope and love are pretty much all that parents have. I see both sides of this argument. Personally, I prefer false hope to no hope; I can’t live without hope. However, I recognize that like everything else about my daughter’s eating disorder, it’s complicated.
It is possible that the outcome in my daughter’s case would still be the same, even if messages about recovery were shoved down our throats from the start. There is no way to know. However, what I do know is that I feel angry and cheated that we were not given the chance to find out.
I have become friends with enough people who beat the odds of recovery from an eating disorder to believe that no matter how elusive or unlikely recovery seems, it is always possible. When recovery is left behind in treatment, put up on an unused shelf to gather dust, it is nothing short of a tragedy.
Every time I fully extend my left arm to reach something, every time I reach behind my back as I am getting dressed in the morning, every time I carry heavy grocery bags from the car using my left hand, I am reminded that it is possible to achieve that which was once unimaginable. I am reminded of the hope of recovery.