by Amy Cunningham
When asked to write this post, I spent a week thinking about what I would say. What could I write that would inspire other parents of children who have, or are, suffering from an eating disorder?
I thought I was hyper-attuned to eating disorders as Emma’s older sister had suffered years before, but since we didn’t do Family Based Treatment with her, I wasn’t clear on the new data and the genetic connections. Emma’s illness could one day not seem to be there, but the next seem to be more present. Too often, ED evolves in such a way that you don’t notice the subtle changes and when you do, it can be too late. Then more weight loss occurs BECAUSE of the disease – the mental illness that slowly takes control over the mind and behaviors. In our case Emma's ED took on its own personality and was a cruel and even violent being. And getting her to eat was one of the hardest things I have ever experienced as a parent.
Today we know that eating disorders – anorexia, bulimia, binge eating disorder – are biologically-based brain disorders and recognized as of psychiatric illnesses in the DSMV-5. Any weight loss can trigger ED if you are predisposed, As I look back it all makes sense: I struggled for years with an eating disorder well before anyone spoke of such things – and feel very lucky to be alive and healthy. My fourth and fifth children were hit. I believe several of my older relatives have suffered – at least I recall several aunties with ED like behaviors. To know this is great because it empowers us to tackle the illness and not the child. RIGHT! You’ve got an ED, ok we have work to do! There is no shame, only hard work and a long road.
And guess what? There is also help and there is hope. Finding a therapist who shared the research-based findings around the effectiveness of Family Based Treatment (FBT) was a godsend for us. FBT is an evidence-based therapeutic approach that empowers the family members, particularly the parent(s) to take control of feeding the child/young adult with the goal of rapid weight restoration. There is no talking about trauma or feelings per se, it’s all about getting that weight back on. One must shop, cook, prepare, feed and feed and feed, supervise meals and post-meals SIX TIMES A DAY.
When asked to write this post, I spent a week thinking about what I would say. What could I write that would inspire other parents of children who have, or are, suffering from an eating disorder?
What could I say to a former sufferer (I like to say a SURVIVOR) who has fought this illness in the past or who is fighting now? How could I communicate the importance of us all coming together on the wide lawns of Capitol Hill in the United States to make a case to Congress to finally pay attention to a disease that kills up to 20 percent of its victims?
I decided to share our story – which is one that took our family from the depths of despair, to a growing sense of hope and happiness. The very fact that I have time or inclination to write this is testament to the solid place we are today in terms of fighting my daughter’s eating disorder. A year ago the picture was very different . . .
My youngest daughter Emma was hit with anorexia at the tender age of 11, just as she was on the cusp of adolescence. In a short period of time she experienced a rapid growth in height, and then loss of weight due to a bout with food poisoning. At the same time she began to be preoccupied with the thought of 'feeling fat' and checking herself in the mirror, no matter out protestations that she was an amazing girl.
I decided to share our story – which is one that took our family from the depths of despair, to a growing sense of hope and happiness. The very fact that I have time or inclination to write this is testament to the solid place we are today in terms of fighting my daughter’s eating disorder. A year ago the picture was very different . . .
My youngest daughter Emma was hit with anorexia at the tender age of 11, just as she was on the cusp of adolescence. In a short period of time she experienced a rapid growth in height, and then loss of weight due to a bout with food poisoning. At the same time she began to be preoccupied with the thought of 'feeling fat' and checking herself in the mirror, no matter out protestations that she was an amazing girl.
Still it was hard to tell that there was a serious problem. She was so young after all – it COULDN’T be ED could it? In just a few months she almost completely stopped eating and no amount of pleading and begging helped. Worse, we live in East Africa and were cut off from ED specialists.
I thought I was hyper-attuned to eating disorders as Emma’s older sister had suffered years before, but since we didn’t do Family Based Treatment with her, I wasn’t clear on the new data and the genetic connections. Emma’s illness could one day not seem to be there, but the next seem to be more present. Too often, ED evolves in such a way that you don’t notice the subtle changes and when you do, it can be too late. Then more weight loss occurs BECAUSE of the disease – the mental illness that slowly takes control over the mind and behaviors. In our case Emma's ED took on its own personality and was a cruel and even violent being. And getting her to eat was one of the hardest things I have ever experienced as a parent.
Today we know that eating disorders – anorexia, bulimia, binge eating disorder – are biologically-based brain disorders and recognized as of psychiatric illnesses in the DSMV-5. Any weight loss can trigger ED if you are predisposed, As I look back it all makes sense: I struggled for years with an eating disorder well before anyone spoke of such things – and feel very lucky to be alive and healthy. My fourth and fifth children were hit. I believe several of my older relatives have suffered – at least I recall several aunties with ED like behaviors. To know this is great because it empowers us to tackle the illness and not the child. RIGHT! You’ve got an ED, ok we have work to do! There is no shame, only hard work and a long road.
And guess what? There is also help and there is hope. Finding a therapist who shared the research-based findings around the effectiveness of Family Based Treatment (FBT) was a godsend for us. FBT is an evidence-based therapeutic approach that empowers the family members, particularly the parent(s) to take control of feeding the child/young adult with the goal of rapid weight restoration. There is no talking about trauma or feelings per se, it’s all about getting that weight back on. One must shop, cook, prepare, feed and feed and feed, supervise meals and post-meals SIX TIMES A DAY.
The motto of parents who do FBT is ‘Life stops until you Eat” and that is what we did. No school, no computer, no activities, no TV, no friends – nothing until you eat. This might go on for months, with incentives as much as possible. It was the absolute hardest thing I have ever done as a parent - it breaks you down on every level, but you just have to continue because it is saving the life of your child. Over time, as the weight comes back (in our case it was almost 1 full year), the brain is nourished and your child slowly comes back to you. Not the same as before – perhaps a bit more tuned to vibrations around him/her, more sensitive, more aware of the fragility of life and the challenges of dealing with mental illness.
Whether families choose FBT or other forms of excellent ED treatment, the bottom line is that you need specialized help to save your child. And in my experience now as a parent/activist many Americans do not have access to ANY treatment for their child's eating disorder. We flock together on Facebook groups like MAED, FEAST, Around the Dinner Table to give and receive support. We also rally for insurance companies to cover ED and are now reaching out to our legislators to effect change. No one should be denied treatment, no family should suffer without help.
So this is why the March Against ED on September 30th and the EDC Lobby Day on October 1st is so important. We must come together to plead, yell, scream, challenge, and explain to our leaders that Eating Disorders are deadly serious, that we need funding for research, evidence-based treatments and prevention and education for families, schools, communities and health care workers. EDs CAN be successfully treated. Everyone deserves a chance to recover. If you can't make it to the Hill please write to your Representative here and tell them why they need to pass the FREED Act. Click on this site http://whoismyrepresentative.com/ and tell your elected officials that you want them to consider and pass the Federal Response to Eliminate Eating Disorders Act, H.R. 2101. Tell them YOUR story!
And thanks to all you warrior moms and dads - so many of you have supported me and my girls!
So this is why the March Against ED on September 30th and the EDC Lobby Day on October 1st is so important. We must come together to plead, yell, scream, challenge, and explain to our leaders that Eating Disorders are deadly serious, that we need funding for research, evidence-based treatments and prevention and education for families, schools, communities and health care workers. EDs CAN be successfully treated. Everyone deserves a chance to recover. If you can't make it to the Hill please write to your Representative here and tell them why they need to pass the FREED Act. Click on this site http://whoismyrepresentative.com/ and tell your elected officials that you want them to consider and pass the Federal Response to Eliminate Eating Disorders Act, H.R. 2101. Tell them YOUR story!
And thanks to all you warrior moms and dads - so many of you have supported me and my girls!
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