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January 15, 2015 · 3:34 pm

Have We Lost Our Voice Or Our Will to Live?

I grew up sheltered from the world, hidden away like a monster that no one cares to look at, and always alone. I had people surrounding me but I was just alone. I grew up to be broken, because I grew up living with an invisible disease.

The word disease is so tarnished and overused, makes me shiver every time I hear it fall from someone’s lips, and all “diseased” “ill” and “sick” people hate all three adjectives. Yet, diseased is exactly what I was. I was constantly reminded by relatives, because it was quite the amusement to have an ill child in the family. I was the centerpiece of attention – everyone wanted to know about me, but really they just wanted to talk about me. And, I just wanted them all to shut up.

Even now that I am well, I carry my disease with me. No one from the outside world would ever know, but my relatives remember, and some enjoy the very task of reminding me every time I am near. I have been asked if I am sure I can go to the gym, or am I too sick? Doesn’t your disease make it hard to own dogs? Over and over I am always underestimated, and yet to say I am the most successful child of my siblings is an understatement.

You see when you are healthy you are not interesting, and no one wants to study you. No one wants to observe a healthy a child, because they want to feel sorry for an ill one to make up for the holes in their own lives. When you are the ill child you have nothing, and what little freedom a child is given is immediately lost in the wind. I have had enough medication shoved down my throat for about 12 people’s lifetime, I have been to more physical therapy than someone who broke every bone in their body, and I was never given an option.

To say I hold no resentment would be lying, but I do hold very little as every step I was forced to take somehow got me to survive another day, but my point makes an interesting case. As American people we have all these liberties and freedoms; we can own a house, guns, go hunting, we deserve fair trials in court for murdering another human being, because as humans we are individuals. The moment you become a “sick” person you lose all individuality. Your freedom is stolen from you by your own body, and those that are caring for you.

I can truthfully state that I was never given an option in my healthcare decisions, and even now as an adult I must fight with all my might for a physician to even consider my theory or someone else’s research. My disease is rare, and at the time of diagnosis there were few to no options available for my immediate care just to keep air in my lungs for another night, but as I grew older I would research other options that would not be so detrimental to my health. I was constantly told no, and being a juvenile I had no other choice but to continue poisoning my liver and kidneys with medication that worked for the moment, but I knew in my heart I would end up paying the ultimate price for consuming them. Not many people would trust another human being to pick their outfit for the day, so why are we so unquestionably ready when a doctor tells us they are going to inject lethal medications into our bloodstream? We are ill informed and insecure when it comes to our own bodies.

If you have ever had to fight for your own life on several occasions you know the importance of retaining some kind of control over your disease management. My point for this piece is not prove doctors wrong or make them out to be money hungry big Pharm, but the small point I would hope to make is to fight for your own body the same way you would while buying a new car. Don’t go to a physician uninformed, do some research, and know more about what’s killing you than the man trying to cure you. Our voices as patients have been stolen by fear because we may sound stupid or our doctor may so no. Patient’s voices should be the loudest in the healthcare industry, but because we are sick and tired we are made out to be weak and compliant. Always argue, always ask, and always push for something better.  At the end of the day we still live with ourselves and the choices we have made, and when we die we die with the same choices. All I want is to not die by the choices I was too afraid to ask for.

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