Dear Doctors and Nurses of Patients with Chronic Illnesses,
Hi. It’s me. You know the patient with the very complex and hard to manage
disease that frustrates you? The patient that you don’t know how to treat? The patient with the symptoms that you have no name for yet? When I am sitting in your examination room, I am probably there because something is bothering me. I may not be the happiest and brightest smiling patient that you see that day. I wish I could smile all of the time. I really do, but sometimes that is extremely hard to do. No, I am not depressed. It’s just a bad day.
You always see me at my very worst. All of our conversations revolve around the latest new symptom, medication, or treatment. I understand that sometimes you have to treat patients as if they are just a number in order to maintain your objectivity and not get too emotionally involved. I can’t imagine how hard it must be to have me as a patient for years and not have your judgment clouded by emotion. However, I want to take a minute to tell you about all the things I don't get to share with you.
You see, when I am lying in that hospital bed in the middle of an admission, I have had to press the pause button on my life. Unfortunately, the rest of the world doesn’t stop to wait for me. But, did you know that before I was admitted recently I received a scholarship acceptance letter? This may sound crazy, with as horrible as I look right now, but in three weeks, I am testing for my black belt in taekwondo. I currently have straight A’s in all my college classes and next month, I am taking a class to get my Wilderness Emergency Medical Technician certification. In December, I am looking forward to spending my winter break skiing and training for next ski racing national championship. I could go on and on about what I have been doing and my upcoming goals.
Hopefully, when you think of it this way, you can see that I am more than just the latest patient to walk into the examination room. While you only hear about the stuff pertaining to my health and it may seem like my illnesses dominate my life, I actually do a lot outside of the hospital. Time doesn’t give us the chance to share some the happenings of my life or latest accomplishment with you, and that’s not why I come to see you, but I promise I am leading the most fulfilling life possible. I am doing my best to live my life to the fullest despite my chronic illnesses.
The Teenage Patient with a Life Outside of the Hospital
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!