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The Side of Chronic Illness You Won’t See on TV

These days quite a few movies and TV shows feature individuals with long-term illnesses. Most of the films and television shows that I have seen center on cancer. Now, I don’t know what it’s like to have cancer, but I do know what it is like to live with several chronic illnesses. After 23 hospital admissions and counting, hundreds of doctor’s appointments, thousands of needle sticks and more procedures than most people will go through in their lives, I think I can explain what it’s really like to spend an extended amount of time feeling ill, in an extreme amount of pain and in the hospital.

Everyone sees the bright, smiley part of me, but let me tell you what happens behind closed doors.

Last night, I fell asleep with my face in a blue plastic bag because I was horribly nauseous. I cried myself to sleep because of some unnecessary drama in my life that I didn’t even bring on myself. I winced in pain as my back violently spasmed and forced me into an unnaturally arched position. I worried about this week’s hospital admission and the round of testing and procedures for my undiagnosed neuromuscular disease. I prayed that sleep would come. I was lucky this time, as I did manage to get two hours of sleep. Most times, I am not so fortunate.

Illness is often portrayed in the media and entertainment as “glamorous.” I’m here to tell you that this is far from the real world. Think about the things I described in the previous paragraph. Is there anything “glamorous” about the struggles I have described? I don’t believe so.

In shows such as “Red Band Society,” teens are free to hide on the hospital roof with other patients and skateboard and roam through the hallways at all hours. They evade the doctors and nurses like it is a game of hide and seek. These shenanigans would never be permitted in a hospital. When you are sick, many people usually have a drop in energy. Have you ever been so fatigued and sleep-deprived for so long that you can’t even lift your thumb to push the button on your pain pump to give yourself a slight bit of relief?

Did I mention the boredom? Sure, magazines, video games, books or Netflix can be entertaining for a little while, but when the hours turn to days and the days turn to weeks or longer, there is only so much you can do to entertain yourself.

These shows don’t accurately show the pain that patients face while being treated for their various conditions. It is not all sunshine and rainbows. Also, consider the fear when we are confronted with another surgical procedure or a risky new treatment that may help or further harm us. You can’t always see the scars from dozens of needle sticks, surgeries and central lines that cover our bodies. It is flat-out scary sometimes.

Don’t fool yourselves. Hospitals are not the playgrounds that the media portrays them to be.

In today’s media, people fighting illnesses are considered “inspirational” and their fights are embellished with unrealistic portrayals of what occurs in hospitals in the media. Somehow, this “embellishment” is supposed to make the battle easier, but the reality is that this portrayal of a hospital environment is far from reality.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.