Today, Lynn Grefe, CEO of NEDA (National Eating Disorders Association), my dad and I went to Albany to address Assemblyman Rivera and Senator Huntley. We talked about the necessary changes that need to be made in doctor accreditation (to treat EDs) and in insurance coverage for these mental illnesses. We also introduced a recent research study that shows that African American women are 50% more likely to have bulimia nervosa than white women...an important step in making the case that these illnesses cross ethnicities and socioeconomic classes. Below is the speech that I made during the course of the day:
My name is Leslie Lipton. I am an author, a speaker, an activist, a volunteer with NEDA, and, until recently, I was a student. But I am not here today because of any of those roles. I am here because I am also a person who has had an eating disorder.
When I was in ninth grade, I developed anorexia nervosa, a very serious illness with potentially fatal consequences. I am also one of the fortunate ones who has recovered from this illness--- but I know many people who have died from complications of an eating disorder (whether it be anorexia, bulimia, binge-eating disorder or a combination of a few). Indeed, it is true that no mental illness has a higher mortality rate than these disorders.
For me personally, my eating disorder took my high school years. It nearly took my college ones also. I spent the summer between ninth and tenth grade in hospital programs---being forced to eat again, regaining the weight, doing intensive therapy. In high school, my hair started to fall out---to the point where my mom had to keep drano by the shower so that she could unclog the drain every few weeks. My body went into ketosis---a process by which one’s body begins to eat itself for fuel. My bones became more brittle as I developed osteopenia. I developed amenorrhea and lost my period for nearly a year and a half. I became isolated and my personality narrowed. I lost friends and missed out on celebrations because the only things I could think about were food and calories, and how I was going to burn off what I consumed or avoid eating anything at all. I suffered physically, socially and emotionally.
I did not, however, do this because of boys or the media or over-controlling parents as we are so often so quick to assume. I was depressed and anxious and starving myself was the only way that I knew to cope with these feelings.
But as I said, I was one of the lucky ones. I got out of this disorder before it had the time to do lasting damage to my body. Most are not so lucky.
We need to change this. And we can. What we need is more awareness and prevention. We need parents or friends or teachers to be able to realize what is happening to their child/friend/student before the situation has gotten dire.
What we need are insurance companies that cover the treatment of these illnesses just like they would cover cancer or any other biological illness (because, after all, that is what we are talking about here). Though a person might be literally dying from an eating disorder, insurance companies often turn them away or cover only a tiny fraction of the cost of treatment. There are many girls and boys in this country who suffer and will die because they cannot afford the treatment that they so desperately need---and their insurance companies won’t help them. I have a friend who called me desperately a few months ago---desperate for treatment but out of options. Her parents had no money left; she had used up all her insurance company’s allowable days of hospitalization; she had searched high and low for a scholarship program that would help her fund her treatment. She was out of options; she was also eighteen years old and weighed 63 pounds at the time. It was horrible, but I didn’t have an answer for her.
We also need doctors who are aware of the signs and symptoms of eating disorders and who are then trained to treat them. My pediatrician, whom I was seeing when it first became clear that I had “food issues,” said to my mother, for example, “Just bring her in--we’ll knock some sense into her...” Clearly, this was not the way to handle a person in such a vulnerable and dangerous position. Eating disorders are not simple illnesses. Recovery is not complete when the weight is back on because these are not disorders that were ever really about the food or the weight. Re-feeding is an important first step but it is not the end. Recovery from an eating disorder is about regaining self-esteem, establishing a connection with the world again and learning to thrive rather than just survive. It is about dealing with the things that came before the eating problems ever even existed. We need doctors to realize this and we need therapists who can take recovery to the next level.
In the course of my own treatment, I have had some great therapists, but I have also had some horrible ones.
What we need to have are standards. We need to have a way of telling whether a doctor is qualified to treat that which he says he is. I have known therapists, who, never having actually suffered with the illness, still know the disorders better than even their patients. These are the therapists that impress me. These are the exception to the rule.
Personally, I have seen for “psychotherapy” a man who, as I found out later, didn’t have a degree higher than a master’s in science, much less any formal training in the treatment of eating disorders. I have had a therapist tell me that I am only an amateur---that there are people out there who are far better at starving themselves than I am. I have had a therapist tell me (the anorexic) to go on the Atkins’ diet because then I wouldn’t have to worry about gaining weight (please keep in mind that at the time I was still severely underweight). I have had a therapist tell me to lift up my shirt and look at my ribs, just to prove to myself that I was still thin. I have had therapists who spent more of my sessions talking about themselves and their own food hang-ups than mine.
And the truth is, I wish I could say that mine is an unusual case, but it’s not. When people ask me to recommend a therapist, I am often hard-pressed to do so. We need people out there with more training. Parents need to be certain, when they send their child off to someone’s office for intensive counseling, that that person knows what he or she is doing. So doctors need to learn and we need to start doing the teaching. And we need regulation---if you are going to say that you are an eating disorder specialist, then you should have something, some credential to back it up.
So I’ve told you what I think we need. But I’m also here to tell you something else today. I’m here to tell you that recovery is possible---and that’s what makes it so important that laws get passed allowing people access to treatment, and good treatment. Today, I have my life back. I am fully recovered. I don’t obsess about food. I eat when I want and what I want. I have friends, and I’m not afraid of celebrating a birthday with a piece of cake---or even two. When I was sick, I never would have believed that I would get here; I credit my success to a lot of hard work on my part but also to a really great medical doctor who was there with knowledge, understanding and expertise even when my therapists were not. I am stronger for having gone through it and I am a different person, but having an eating disorder is Hell and I wouldn’t wish it on my worst enemy. A bowl of ice cream before bed, or an Oreo, SHOULD NOT be torture, and it isn’t anymore.
The saddest part of all this, for me, is that I know what is possible for life after an eating disorder. I know that you don’t have to live in a jail with calorie counts or fat grams as your prison bars. And I know that anyone out there struggling can have what I have now...we just need to get them the help and the treatment that they need. Recovery is not an insurmountable battle. And with some help from Albany and Washington, and a lot of strength and perseverance on the individual’s part, I believe that many lives can be saved.
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