"She has an eating disorder. It's all in her head. She can eat just fine, she just doesn't want to."
That's what the doctors told my parents. That's what they told me. I was left confused, anxious and heartbroken. Why didn't anyone believe me? Couldn't they see that I wanted to eat, but just wasn't able to? Couldn't they see that I was hurting so deeply. That I was scared. That I just wanted to get better? Why were they labeling me like this? Did I really just have an eating disorder and didn't even realize it? Was I that blind? Was I that unfamiliar with my own body?
The accusation first began in 2008. I was experiencing pain when I ate and I discovered the less I ate, the less pain I was in. Bingo! Problem solved... Or that's what I thought. In reality I just created more problems for myself. I began to lose weight. At first it seemed nice. People began remarking on how skinny I was or that I looked good. But soon I began to lose too much weight and became a shadow of my former self. I realized there was a problem and asked the doctors for an NG (naso-gastric) tube so that I didn't have to eat. They agreed, but admitted me to the hospital for an eating disorder, not believing that something was physically wrong with me.
I began to question myself. Wondering if I truly suffered from an eating disorder. I began to convince myself that I did have an eating disorder. I believed if I could convince myself that I had one, then maybe I could get better. The doctors knew best... right? So that's what I began to do. I began to convince myself that I was suffering from an eating disorder and that I only needed to change my thinking pattern and then I would get better. I just needed to change my behavior and then I'd be cured. Simple and easy... or so I thought.
I went through the treatment program for an eating disorder and successfully passed. I didn't really feel better when I ate, but just realized I just needed to suck it up and deal with the pain associated with eating. I was "better" so that meant that now I could continue on in life and be successful. I didn't have to worry about my stomach anymore.
I went through the next couple of years dealing with the pain associated with eating. Then in July of 2011 things took a turn for the worse. I would eat a meal at night and the next morning would still be full. I usually went for a run each morning. Sometimes that helped the food move through, but other times I would vomit food, from the night before, at noon the next day. I was confused, but didn't say anything at first. I didn't want them to treat me for an eating disorder again. I thought I was past all that. Eventually I couldn't keep silent anymore.
In August of 2011 the doctors did an exploratory laparoscopy to see if there was anything on the outside of my intestines that was causing me to be unable to digest food. They didn't find anything. Next they gave me a G-J (gastric-jejunal) tube. The G portion of the tube drained the contents of my stomach. The J tube was inserted into the second part of my small intestine and I received all my nutrition via that tube. I experienced a lot of pain and nausea after I got the tube. The doctors couldn't figure out why I was feeling so sick so they wrote things in my chart that weren't true. They said I deliberately dumped out my feedings into the trashcan by my bed and that I unhooked the IV tube from my feeding tube and let the IV tube pump the formula into the trashcan. They claimed I shut of the IV pump so I couldn't receive the feedings. They denied that I was cooperative. In essence they painted a picture that made me appear like a patient with an eating disorder.
I left the hospital with this diagnosis and remained out of the hospital for a couple months. Then I was readmitted to the Children's Hospital in January of 2012. When I was admitted I was diagnosed with an eating disorder, for these doctors were basing their diagnosis of the notes in my chart from my August stay. Once again I entered a treatment program for people suffering from an eating disorder. It felt like deja vu. I was heartbroken. Why was this coming up again? I thought it was in the past? Is that really all that was wrong? Did I really just have an eating disorder?
I once again completed the program and "graduated" successfully. On the outside I tried to portray myself as a happy healthy girl, but on the inside I was suffering. I felt like I was locked in a torture chamber. I never felt hungry. I constantly felt like I had to stuff food inside of me. It was horrible. I was miserable, but I held my tongue because I didn't want to go through another eating disorder treatment program.
Eventually I told my mom how I was feeling. I told her about the confusion, the anger and the pain that I was suffering from. I told her that I had tried to convince myself that I had an eating disorder, but I still felt sick even though I had "graduated" from the program. She asked why I hadn't told her sooner and I said it was because I was afraid. I was afraid that I wouldn't be believed. That I would be admitted to another program. That I would continue to be stigmatized.
In convincing myself that I had an eating disorder I sustained many emotional and psychological wounds. Deep wounds that took years to heal from. I was misdiagnosed because my true disease is so ambiguous. My disease is an invisible illness and as a result of that I was misdiagnosed and left with wounds that have now become scars. I began to heal through writing. I wrote two books, "A Blessing in Disguise" and "Blessings in Hidden Places". Through writing my first book I healed and through writing my second book I showed others how they might be able to heal.
I was eventually diagnosed with gastroparesis with dysmotility of the intestinal tract and hyperalgesia. In simpler terms my stomach and intestines are nearly paralyzed and I am super sensitive to pain. When I received my diagnosis I felt a sense of relief. This too allowed me to heal. Even with the diagnosis I still face criticism from people who see me.
I've been stopped many times in public where people ask me if I'm okay. They question whether I eat and if I need help. I simply smile and tell them I have a gastrointestinal disease, but their comments still hurt. I don't blame them though, because I feel like I would assume the same thing if I saw someone, as skinny as me, in public. It just goes to show you how painful assumptions can be and that in reality even though we don't want people making assumptions about us, we still make them about others. So it leaves us with a good reminder that we shouldn't just assume things about others, but instead give them the benefit of the doubt, for they too may be suffering from an invisible illness.
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