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    Posted January 23, 2014 by
    Deannacots
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with a Hidden Disease

     
    I have Chronic Pancreatitis, diagnosed at 16. I did not get my disease from alcohol or drugs, rather I have rare genetic mutations. I am now 21 years old. I am not only my disease. I go to school at Johns Hopkins University, I am president of several organizations, and I will be graduating this May. I want to be a surgeon. After graduation, I will undergo a total pancreatectomy with auto-islet cell transplant. Surgeons will take out my pancreas, spleen, and duodenum. I will have my islet cells transplanted into my liver, with the hope of them producing insulin. Then after, I hope to recover quickly and move onto medical school. Half of the people I am surrounded by don't even know I am sick! They have no idea the pain I endure everyday. Chronic Pancreatitis is a disease in which warriors battling it constantly hear "you don't look sick." That's why I call it a hidden disease. Warriors are constantly in battle everyday with our own bodies. It takes away so much from us. Pain, starvation, pure agony, and time are a few common symptoms. However, many of us get up every day and go about accomplishing our goals. I started a blog shedding a positive and humorous light on having chronic pancreatitis. I truly believe having this illness as a blessing, because if you can deal with this disease, you can deal with anything. I'm a soldier, not a patient.
    Many people have never heard of Chronic Pancreatitis. This makes the struggle more difficult. Every time you tell someone what you have, a million questions follow and the "oh my" look. Instead I like to say "I have a weird pancreas thing, no big deal." People can't handle that it is a big deal, so its comforting for them to hear a warrior describe it as a little issue. The topic of my disease mainly comes up when I go out to eat or when I'm at a party and I can't drink. I take 4 pills, 3 times a day before I eat, along with a dozen other pills in the morning and at night. I've become an expert at hiding my pills before I take them, but sometimes people notice and ask what your doing. Then I whip out the old, its no big deal spiel.
    I would say the hardest part of having this disease is dealing with the judgement of others. Going to the ER for a pancreatitis attack results in being judged as a drug addict looking for a morphine fix. Standing in line for an ultrasound, while others assume I am a young, single pregnant girl. Going to the pharmacy and having people cut you in line, thinking your waiting for birth control or something small. The look on their faces when you are leaving with a bag full of drugs is the most pitiful face I've ever seen. Everyday you are judged because you are going through all of this and "you don't look sick." It's a hidden disease.
    I think being so young with disease has helped me inspire others who have it as well. We are warriors but we are also survivors. Everyday when I get up and go to class, its a victory. On days that I can't because I have a double edged knife stuck in my abdomen, stabbing at my insides, I learn to grow stronger. I thank God that he didn't give this disease to someone weaker than me.
    It's tough but it's what got me interested in medicine. Being a warrior is why I will make a great surgeon. I encourage the world to think twice before they judge someone. Every person has a story, whether its hidden or exposed. Every person is carrying a burden and its time we listen to each of their stories.

    Here's the link to my blog. it's become pretty popular amongst those with chronic pancreatitis and other chronic diseases.
    http://whatyoudonotsee.wordpress.com/

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