Yesterday, a mother called me to talk about her daughter’s recent eating disorder diagnosis. She was extremely emotional and cried throughout the entire call. I tried to say all of the right things to calm her down, to make her feel more in control of the situation and less scared and alone, but it was a hard sell. Midway through the conversation, she said, “Okay, I stopped hyperventilating”, but I could still hear the tears even though I couldn’t see her face.
I felt horrible ending the conversation with her still in a state of distress, but the simple truth is that while I gave her some helpful information along with a lot of encouragement that she is capable of getting her daughter through this and the feeling of being supported, I can’t take away her anguish. This poor mother is experiencing utter and total devastation. To her, it feels like her entire world is being destroyed. I can tell her that I understand, because I do. I can tell her that I have been where she is right now, because I have. But the sad fact is that her daughter has a monster of an illness, and while recovery from an eating disorder is certainly possible, the path to get there is fraught with suffering.
There’s no way to get to the other side without walking through hell. I know that. I can’t lie and tell her otherwise, that would just be cruel and pointless. I can tell her that her daughter’s case is promising, because it is. I can tell her that a positive outcome is truly possible, because it is. I can tell her that she is doing all of the right things, because she is. I can tell her that her daughter is in the acute phase now, and the acute phase is the absolute worst, but that things will get better, because chances are, they will. But right now, this mother is experiencing one of the most horrific situations known to mankind; her child is sick with an illness that has an abysmal recovery rate. When our kids are diagnosed with an eating disorder, we cry and we hyperventilate and we hurt so badly that it feels like we are going to break into a million tiny pieces, that our bodies are going to shatter just like our hearts.
The data on eating disorder recovery and prognosis are variable depending on who you ask and what you read, which leads me to believe that no one really knows the full picture. Some people, the truly blessed and fortunate ones, fully recover from eating disorders. Others die from eating disorders; some through physiological manifestations of the illness such as cardiovascular complications and others through psychiatric manifestations of the illness such as suicide. And the third group falls in to the “severe and enduring” category, the chronic category, which is what I refer to as twilight. The sun is below the horizon, but it is still there. It’s not fully light and it’s not fully dark, it’s somewhere in between.
After one’s child is diagnosed with an eating disorder, when they are in the acute phase of the illness, it’s an instinctive parental reaction to put our lives on hold and to invest absolutely everything we can into our child’s recovery. The focus of our lives is to get our child better, many times to the exclusion of all else. This can take a toll on the other children in a family, on a marriage, on other relationship dynamics, on professional responsibilities, etc. The center of the universe becomes the sick child, and everything and everyone else temporarily fall by the wayside.
Often, the acute phase ends, but your child is still sick. And this is when parents have to come to terms with the “new normal”. Even when recovery happens, many times it is a process that can take a long time, which means that parents have to figure out what their lives are going to look like, what their family is going to look like, going forward.
The thing is, that even when your child has a chronic illness, life goes on. There are special occasions to be celebrated, times to be treasured, moments to be savored. There are other kids who need parental attention, who need reassurances that everything is going to be okay, even if it’s not going to be okay at all. Somehow, as the parent, you are going to have to make it okay.
Some parents can’t make that re-entry into their previous lives and create a new normal when their son or daughter is still sick. Their pain is too deep. They sacrifice themselves on the altar of their child’s eating disorder. More often than not, they sacrifice their entire family as well. While understandable, it’s positively tragic.
It took me a while to find a new normal that I could live with. I decided that my daughter’s eating disorder can’t have me too. I will not let it keep me from experiencing joy, from being present in the lives of all of my children and grandchildren, from savoring the good things in life. I made a very conscious decision not to lose myself in my daughter’s illness, because I could have. Instead, I decided to try and give it boundaries. I say “try”, because it doesn’t work all of the time, but it’s a reasonable strategy.
At the fork in the road where I had to decide how to move forward and where to lead my family, I chose life. I don’t want to live in the twilight, I want to live in the sun, where it’s warm and bright. Right next to me, there is a place for my daughter, should she find her way out of the twilight and above the horizon someday.