It is, without a doubt, the least discussed issue where eating disorders are concerned: the real cause. Those educated in the area of eating disorders know full-well that eating disorders stem from multiple sources and are triggered in multiple ways. Psychological, interpersonal, social and, yes, biological elements are all part of the eating disorder origin.
As I reflect on my illness and recovery, I see patterns of blame, guilt, and a sense of hopelessness that definitely needs to be brought to the surface: blaming parents and family for the state of the victim. Unbeknownst to those unaffected by this affliction, parents are challenged on three, and possibly more, fronts: blame, guilt, and treatment barriers.
First we will address blame. “Why are you not doing anything? You’re sitting here watching your child kill him or herself.” Sound familiar? This is just one of the many hurdles that parents must go through while trying to save their child’s life. The truth is, they’ve already done the most important thing any parent could ever have done: loved their child. And, when it comes right down to it, they will have become educated enough about eating disorders to recognize that the problem is real, that it isn’t their fault. Most importantly, they learn how to support their child’s recovery.
Last month I had the privilege of speaking to individuals in recovery, some of whom were in fantastic places and some that were still working through the cobwebs holding them back. Overall, though, I couldn’t have been more honored to attend that remarkable event. What stands-out about this occasion was the connection I had with parents, and one family in particular. Their sense of anxiety, distress and feelings of guilt, really resonated with how my parents probably felt in the same situation. However, the love I witnessed them give to their daughter is something I will take and share with as many other parents as possible.
Parents often believe that they are the cause of their child’s disorder; they assume that they could have or should have done something better. I’m sure they’re thinking that they should have done something sooner, intervened at the “right” time, or saw the signs in their own child; they could have taken a bad situation and prevented it from becoming worse.
At this point in my life, I cannot identify with any of you on what it’s like to be a parent. But I am going to assume that you probably have believed that somehow you’ve caused the illness. Please listen and take ownership of the fact that there isn’t any research to claim that you are responsible for the illness itself. Forget the notion that eating disorders are caused by being a “bad parent,” even if your gut-reaction makes this statement hard to believe.
After a group session at the event last month, a father, mother and daughter stood to exit the room. I approached the mother and simply said, “Mom, keep fighting. Your daughter is going to be all right, and she is very fortunate to have both of you for support.” The mother immediately broke-down in tears, though still trying to hide the uncertainty about her daughter’s recovery from those around us. It was an interesting exchange between us because, like my mother, on the outside this woman presented unyielding strength and composure, even when her fears were unbearable.
Now, we’ll move onto guilt. Parents, this message is for you. Please don’t feel that you must take on the responsibility for the eating disorder; it’s something you never really have control over. Once you can accept that the eating disorder isn’t your fault, you are freed to take action that is honest and not clouded by what you could or should have done. You are the best line of defense for your child. Whomever you pray to, (if you pray to someone or something), know that you were not “given” this disease to struggle with and your child wasn’t “given” this disease as punishment. As your child tries to re-shape their thoughts, try re-shaping yours into, “My child and I are experiencing this because someone/something else knows that we are strong enough to endure it.”
I’m sure you’ve been offered questions like, “Why would a loving parent who saw their child every day not notice that they were suffering with something like this?” Counter that poor misconception with the knowledge that eating disorders start slowly and often simulate normal changes in your child’s behavior. Realize that one of the most essential things you can do for your child is protect them. Your goal isn’t going to be taking control of your child; it is simply going to be encouraging them to take control of him or herself.
“I hated who I was, my un-fit body, I thought I was dumb, and felt like I didn't fit in. I never felt confident and I always sensed that others were better in every way. Even though I had a lot of friends, no one truly understood me. If you were to ask my high school friends now, they’d say I had plenty of friends. I never felt like that.”- Journal entry during residential treatment, 2009.
Your child is yours, regardless of their age. The last thing you as parents want to see is your child believing a flawed-perception of self. Many bystanders don’t realize that eating disorders can happen to individuals who are incredibly bright, achieve the good grades and are physically attractive by societal standards. What isn't seen by the outside world is the hopelessness that child may feel, and their attempts to overcome that hopelessness with the good grades, high intellect, control of their physical body and by suppressing their emotions.
Finally, parents not only deal with stigma and struggle with their own self-doubt, they battle tangible barriers with insurance coverage after the recognition of a problem.
We all want to believe that our children will be taken care of if they get sick. But when eating disorders are concerned, parents often hear, “Sorry, you’re not covered.” I’ve heard horror stories of individuals who have exhausted their insurance coverage, have racked up hundreds of thousands of dollars’ in treatment costs, and have even lost homes that have been in the family for generations.
Insurance companies are unenthusiastic about paying for eating disorder treatment and claim they are psychological in nature, not biological, and end-up under the mental-health umbrella. When a patient needs to be hospitalized to stabilize the basic functions of human life, the care usually is covered as a biological necessity. However, once doctors decide a patient’s physical health is stable, the disorder then is categorized by the insurance company as a mental illness. Even with physical stabilization, the underlying cause of the illness is not addressed. What’s the moral of the story? Mental health coverage really isn’t coverage at all.
I want parents to know that advocates hear you, I hear you, and survivors are listening. I realize you’ve probably never expected to deal with anything so challenging or feel ostracized in your efforts to support your loved ones. I realize how frustrating it is when an otherwise intelligent medical community just hasn’t got a clue.
I promise to keep fighting the stigma, barriers and loneliness of this disease; but I encourage you to use every opportunity to educate others about your story. Two and a half years ago, I was overwhelmed with anxiety throughout my early recovery, about my body getting better and my mind being left behind. I think it’s only natural for you as parents to experience that same intense fear for your own children. Although it was difficult to grip the reality that my eating disorder was a symptom of bigger wars in my life, I know that this isn’t an illness for any individual, family, or parent to be ashamed of.
In closing, I’d like to say that at the end of the day, Mom and Dad, your child’s illness isn’t something you can control, and you couldn’t have done a better job than what you already have.