- Posted May 19, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Screaming About a Silent Disease
- dsashin, CNN iReport producer
The voices of friends say it is all in my head. Just lower your stress and all will be okay. Family pats me on the back and gives a warm smile or hug, but then when I am not around wonder if I am just blowing things out of the water again. I am screaming at the top of my lungs, yet no one can hear me.
Another day passes and the dawn of new one quickly follows, yet each and every day, someone is in so much pain, so much discomfort, so silent not because they don’t have a voice, it is that silent disease disguising itself once again. No one can understand it, no one can see, no one can feel unless they themselves are inflicted with this disease.
No one will see even if they know to look for it. No one will see it even if they know of someone with it, because to see this silent disease, you have to have suffered from first. To hear the screaming voices, you have to be inflicted with a disease that no one can see.
Recently, another angel ascended to place we will never know until its too late to enjoy the ride there. Far too soon, far too young, far too many have paved the path and more will follow it in the future. Even in death, this silent disease is not heard. The voices are lost, the spirits are gone, and the battle is lost. A battle no one knew someone was battling. It is a battle that over 1.5 million Americans fight each day. Young and old, girl or boy, short or tall, skinny or fat, it doesn’t pick a race or a nationality, it doesn’t pick a region or a country. It just travels and reaches anyone at anytime it chooses. Only problem is that it never comes for a visit, it comes to live until the person’s body is dead.
Doctors can see it and still not truly know what path each person will face. They will throw everything but the kitchen sink at it, hoping, praying that something, anything slows it down. Slows it down for an hour, a day, a week, a month, a year, a decade, anything that will give the person a time of relief is all these doctors spend their time trying to accomplish. This silent disease will just lay back, relax and not attack, until it decides when it wants to impact someone’s life. No one can hear it coming, no one can know it woke up, because by the time the person knows, the damage is done and the doctors try to dash the flames, but have no idea what is causing the fire.
People who have this disease will hide it from friends and family, coworkers, classmates, and even their own doctors. Some out of shame, most out of fear. Fear in what lies ahead, a long and winding road, a short and bumpy road, or sometimes even a dead end. There is no turning back; there is no road map. There is no going in reverse, there is no turning left or right abruptly, there is instead an undetermined amount of road to travel that may take you one day, one week, one month, one year, one decade, one lifetime to complete with the hope that maybe you will be the lucky one.
The screaming voices can be heard, but only by people who live with this silent disease. Only people who have lost loved ones to this disease.
Today is the day that this silent disease is no longer silent. Today (May 19, 2014) is World IBD Day 2014. Today is the day we get up on the roof tops and scream at the top of lungs to anyone who will listen, to anyone who has the power to help, to anyone who has the courage and strength to endure a battle with no end in sight. Today is the day we talk, we listen and we come together so that this disease is no longer silent, that this disease is no longer looked at as something you cannot see. Everyday in this country, we are losing people to these diseases that up until today has had a hard time getting its voice heard. Because there is no certain end, there is no expected pattern or outcome, people are afraid to waste their time on something that has a moving target. There is no easy road, there is no simple plan. But a promise can be made that whoever is willing to standup and scream at the top of their lungs has the ability to make a difference. They have the ability to influence those who do have the power to make change happen, make change real!
Today, we stand up and scream at the top of our lungs that Digestive Diseases are no longer silent diseases that are locked in the bathrooms. Some are chronic diseases that can debilitate someone very fast or very slow, such as Crohn’s Disease or Ulcerative Colitis. Or can kill you without you ever knowing you were infected, such colon cancer. There are no cures, there are no known causes. It’s not in the people’s heads, its not some crazy environmental influence. These are deadly and debilitating diseases that strike from within, without any notice or any pattern. Like fingerprints, no two people experience it the same.
The only way we can abolish the silence is to educate and build awareness around these digestive diseases. Today is the day to stand up and yell stop. We need to help these people, because everyday we are losing someone who could have changed this world. There is still time to have those who have passed still have a lasting impact well beyond their years had they been alive. We need to hear those screaming voices. They are not inside our heads; they are inside our hearts, our minds and our bodies. If we can do just one thing today, we should all scream and ask what it will take to get the attention of the media, of the politicians, of the researchers to pay attention and understand their role. Then maybe, just maybe we can lower our screams to a more respectable roar, and attack these diseases like a lion hunts the gazelle.
We are screaming, does anyone, do you hear us?