Many of you who know me personally followed my journey with Superior Mesenteric Artery Syndrome through Purple Band Society. For those of you who didn't, I became ill during my senior year of high school to the point where I was hospitalized for ten days and spent a month with a feeding tube. My condition had caused part of my small intestine to be cut off so it was incredibly painful and nearly impossible for food to pass.
I cried a lot. I cried from pain, I cried over watching my ballet muscles melt off my body, and I cried over having to wear double zero shorts. But the first time someone else made me cry was during my stay in the hospital.
My eating habits did change as I started to feel worse. I stopped eating all of the healthy food my mom packed, normally I wouldn't eat at all. I knew how this looked to others around me. I was getting thinner and thinner, and eating less and less. I never thought to address what could be going through their minds, but finally it happened.
I was accused of being anorexic.
I was lying in my hospital bed, barely 110 pounds. I had a slow feed going on my feeding tube, I could barely walk on my own, and I was going on day 7 in the hospital. A friend of mine at the time gave me a call, and I can't even tell you how excited I was that someone was calling. I was bored out of my mind. The medicines that I was on made it hard to focus my eyes so I couldn't read and the wifi at the hospital made it nearly impossible to watch netflix. A phone call from a friend was something that would take my mind off the boredom.
I picked up my phone, happy to finally talk to someone that wasn't my mom or a nurse (even though my mom is the best and my nurses were amazing, I missed people my age). But the first words that came out of her mouth weren't a comforting "how are you?", or "can I come visit?" it was an accusation.
Lying in a hospital bed, already dealing with the mental side of a chronic illness, I was being accused of my worst nightmare. I had worked so hard on my body image as a dancer, trying to keep myself strong and positive and to never fall in the trap of eating disorders. But here I was, slowly starving to death, and I was being accused of an eating disorder.
Chronic illnesses are hard to understand. I had mentioned several times on my Facebook page that what was happening to me wasn't because I chose not to eat, but because I physically couldn't. I didn't expect everyone to fully accept it, or to even believe that my disease was real. I never thought someone would confront me about it, especially at my most vulnerable time.
That was the first time I cried because of a nasty comment about my illness. I had never had anyone hurt me that way, no one had ever questioned my mental state and that I could have done this to myself.
I have lived a sheltered life in the chronic illness world. I have a dad who is a doctor and can help me get the best care possible, and a mom who is ill as well. The two of them take the time to listen to me and take me seriously, always believing me when I say that something is wrong. I know that this isn't the case for everyone.
Up until that point in the hospital, I hadn't had a single person doubt my illness. Being accused of an eating disorder broke my heart. It tore down every mental wall I had built to get myself through the hospital stay. Tears flowed consistently for 2 days, I even asked all of my nurses if they thought I had an eating disorder. Their reassurance that they had seen many eating disorder patients and I wasn't one didn't matter. Someone had broken the unspoken rule of dealing with chronic illness.
Never doubt a person's story.
The trials of an illness are already incredibly difficult to handle. When someone doubts your diagnoses, it hurts more than anything I have every felt, and I've had a tube shoved up my nose.I didn't realize how common this was in the chronic illness world, especially those with rare illnesses. I had never been exposed to this side of medicine, the doubting, the accusations, the pain of not having someone believe you.
You have to pick yourself up after this one. One person saying they don't believe you isn't going to change what your doctor thinks. As long as your doctor believes you and is willing to treat you, you're going to be ok. I was very lucky to find an amazing doctor to take care of me, and amazing parents who believed me from the moment I told them something was wrong.
One person can make you doubt your whole experience, but it's only one person's opinion. What matters is that you know what's true .