Saturday, January 12, 2013

Open Letter To Parents of Children With Eating Disorders

Dear Parents,

I knew it would happen eventually, and while it hurt like hell, I am keeping it in perspective that it was one negative piece of commentary out of hundreds upon hundreds of positive ones. When something hurts me, the thing that helps me the most is comforting others, so this letter is how I am expending this energy.

If your daughter or son has recently been diagnosed with an eating disorder, at some point you may well encounter someone (or many someones) who insinuate that you are to blame for your child's disease. However, they needn't have wasted their time musing about what your home life must be like, how you parent, or what you must have missed in order for this to take hold, because you already beat them to it. I feel confident in saying this without knowing you personally, because I have yet to meet a parent of a child with an eating disorder who has not lost countless hours of sleep doing just this.

For me, personally, I know that when I realized my daughter had an eating disorder, I went over our lives with a fine-tooth comb. I was as sure as you possibly can be without living in another person's body that she had never been sexually abused, so often the first question asked. So I examined each and every other trauma she possibly could have lived through, and my responses to each one. I teased out the nuances of our relationship. Even though we have always been generally close and loving, I ruminated over each and every moment of disagreement we had ever had, days when I came home from work too tired to be as emotionally present as I typically am, the ins and outs of her infancy, toddlerhood, childhood, puberty. I beat myself senseless over every real and perceived flaw in my parenting and our human lives which had always seemed pretty good to me, but maybe now that I was thinking about it, not good enough.

Maybe I should have not been happy that she had been an easygoing girl who learned quickly and never got in any real trouble. Maybe when her dad and I divorced and we took all of our kids to a counselor so they would have a neutral third-party to talk to, I shouldn't have believed the therapist when she said my girl was handling it in a healthy way and didn't need any more sessions after the first three. Maybe I shouldn't have taken her at all, because I somehow pathologised it and created a problem where there wasn't a problem.

What about the fact that after the divorce my kids started school for the first time after being homeschooled for so long? Her sisters were game to try it out, but she was resistant. She didn't want to go. Maybe I should have fought her dad more on that front, paid for expert witnesses on homeschooling even though I didn't have the money to do so.

When my mom was dying, I left my kids here with their dad in order to fly home to see her one last time. I was gone for two weeks. Should I have stayed here to process death and grief with her instead of going to my mother?

Does any of this sound familiar? You may well have your own variations on the theme. It is a common form of temporary insanity.

Did you miss something? Probably. Fish can't see water. Eating disorders don't take hold overnight. They are subtle and slippery. And when you live with someone day in and day out, tiny, subtle changes are often not obvious until they are glaringly obvious. When she announced she was going vegetarian, I figured it was due to her soft heart and compassion for animals. My vegetarian friends praised her. When she started exercising, everyone praised her for caring about her health and her (at first) increased muscle tone. Because I had the audacity to sleep at night, I had no way of knowing she was doing hundreds of crunches at a time after lights out. And on and on. When she was 14 and expressed concerns about her looks, we reassured her that puberty and getting older were supposed to evoke changes and she was totally normal, but didn't find it particularly odd. My god, how could we not have seen the signs?

But here's the thing. We know that typically, exercise and eating mostly healthy foods are good for your health. So, most parents feel proud, not scared, at first when their teen shows an interest in their health. Find a teenage girl who has not expressed dissatisfaction or insecurity about some aspect of her body, and you will find one rare girl. You probably did miss some signs. This doesn't make you a terrible mother. It makes you human.

I did notice a problem before the professionals did. And I pointed it out time and time again. I was completely blown off until the issue was staring us right in the face, all hard angles and hip bones. They all assured me it was not an eating disorder, because she didn't yet meet the criteria. She had periods and her BMI hadn't dropped dangerously low yet, so she was just. fine. Most pediatricians, by the way, have very little, if any, experience with eating disorders. As I would soon discover, neither do many psychologists and psychiatrists.

I have two other daughters. Neither of them have disordered eating. I couldn't understand why my parenting could result in two healthy children and one who was suffering. I don't have disordered eating. I enjoy food. I am happy to eat when I am hungry and happy to stop when I am full. Much of my diet is healthy, but I feel zero guilt if I want some ice cream or fried chicken. I fear throwing up something fierce, and the idea of doing it on purpose has never crossed my mind. Overall, I am quite happy in my body, flaws and all. This wasn't modeled at home. Where did she learn how do to these things? Where did she learn how to hide them so well? This question led to my discovery of the frightening underbelly of the online eating disorder world. Hello, pro-Ana/pro-Mia websites. If you don't know about these websites, you need to get acquainted. In all likelihood, your child knows them intimately and has memorized every last tip and trick of the illness from other ill women and girls who spend countless hours supporting one another in staying sick. Or getting sick. They proudly proclaim that "It's not an eating disorder, it's a lifestyle choice!"

There are a lot of factors to consider, but may I suggest that turning your guts inside out guilty over what you did or didn't do is probably not going to get you anywhere in helping your child recover. Between what I have experienced personally, and what other parents have shared with me, here are some things professionals will tell you about parental roles in the creation of eating disorders.

If you have a warm, close, loving relationship with your child, it is your fault. Normal teen/parent relationships are stormy, and that is good because your child has to push you away and form close bonds with their peers in order to not become enmeshed and grow up properly. They are refusing to eat in order to indirectly do this.

If your relationship has been stormy, you were not warm and loving enough. You need to become closer to your child. They feel unloved and are starving themselves because they feel empty and unloved.

If your family is strict and has a lot of rules, your child feels a lack of control and is controlling the one thing they can... what goes into their body.

If your family is relaxed and has few rules, your child feels unmoored. They are refusing to eat in order to force you to step in and take a parental role, to take control.

If you ask too many questions of the professionals, ask how you can help, keep detailed logs of their disordered behaviors and bring them in with the hopes that it may help with their treatment, you may be told to back off, you are giving it too much attention, you will make the problem worse.

If you back off, even at the advice of these same professionals, you may be accused of not taking enough of an active role.

In short, no matter who you are or what you do, someone may very well tell you it is wrong. You may end up feeling bewildered, and as though you can't win.

Please take heart. The truth is, the professionals don't even know what causes eating disorders. Remember that in the not so distant past, parents (particularly mothers, because this is a patriarchal culture) have been blamed for causing everything from cancer, autism, and schizophrenia. All of which we now know is complete and total bullshit.

I know a lot of fantastic people in the mental health field, so I won't sweep them all up with the same broom, but I will say that I have encountered a lot of  people with Dr. tacked onto their name who have huge egos. Nothing hurts the ego more than humbling yourself and admitting you don't know something, or that you may think you know something, and then science presents new evidence to the contrary. Unlike much of psychiatry that is based on heavy research and strict standards for evidence-based care, in some cases, eating disorders are still treated the same ways they were fifty years ago, with little to nothing to back up the methodologies. When you don't know why something is happening, blaming someone is a classic fall-back. I knew my daughter's psychiatrist was less than ideal when I asked him about success rates of different eating disorder treatments and he waved his hand at me and said, "They all work if you actually do them. Just enroll her in a treatment program and do whatever they tell you to do."

No family is perfect. We can all look at ourselves and find very real ways in which we can change for the better. This much is true. It is also true that by the time you land in a psychiatrist or psychologist's office for a child's eating disorder, you may well appear more dysfunctional than they did pre-eating disorder. When you are terrified that your child may die, you may well appear nervous and controlling, because if there is anything in the world you want to control it is restoring your child to health instead of making funeral arrangements. The other children may very well appear sad and angry, because their whole world has been flipped upside down from stress around a sibling disappearing before their eyes and lost attention as their parents focus heavily on the child most in danger. Had the same family been encountered by the expert a year or two prior, you may have seen relaxed parents without major control issues, and a bunch of normal, happy kids with nothing bigger on their minds than whether or not they would get the lead role in the school play. Trauma creates people who look and act traumatized. Eating disorders traumatize the entire family.

You may find some minor comfort that there are indeed professionals in the eating disorder field who are saying just that. Daniel Le Grange, PhD and James Lock, MD, Ph.D both emphatically state that evidence that parents cause eating disorders is weak, at best, and that parents can and should be an integral part of the recovery process. Interestingly, their recovery rates and time from initial treatment to recovery are much better than many approaches. There is also mounting evidence that there is a biological component to eating disorders.

Do your research. Love your child. Take an active role. Don't fall into the parentectomy trap. You would never in a million years listen to a doctor who told you to stay out of it if your child had any other disease with a 20% mortality rate, and anorexia is a disease. Stop blaming yourself for not being perfect. You can be a very good parent and an imperfect person all at the same time. If not, there would be no good parents. Seek out supportive people and avoid toxic, blaming individuals as though your child's life depended upon it. It very well may be the case.




2 comments:

  1. Beautifully written. Gentle but point very well expressed.

    Our family is struggling with our daughters addiction to pain pills. A journey I wish to escape from. I have watched her change and morph into a creation so unrecognizable. I get the judgement and the accusations that we as parents have screwed up along the way. Somewhere in my daughters brokenness we missed the cue. The countless hours spent rerunning the last 19 years trying to see what it was we missed.

    I have been thinking of you since the initial post on Denise's blog and you hold such grace and light around your daughter. How did you get to this place, and how did you let go of all the anger and disappointment?

    I would love to hear back my email is melissa805@mac.com

    Hugs to you and your family.

    Melissa

    ReplyDelete
  2. I read your plea on your daughters behalf. Here in Utah we have an amazing clinic for eating disorders and addictions. It is called ,The center for change. I thought you may want to know.

    ReplyDelete