Words words words. Everyone wants me to talk about how I am feeling, to share how it feels to be ill. To explain to them why I feel the way that I do, and they want me to use words to do it.
But sometimes there aren’t any words, sometimes I don’t have any left, and sometimes no matter how I explain it, you won’t understand.
Because the truth is, there are often no words to describe what is going on inside of me. Words can never do my illness or my feelings justice, no matter how many of them I use.
Why do people want me to talk? It’s because we are a society based on words, and our language is unique because there are an infinite number of ways to express oneself. But despite these infinite possibilities, I often find myself searching for words that I never find. I think if I just keep talking I’ll be able to perfectly describe what it is like to be sick. But that is never the case.
Recently I learned something. I learned that no matter how much I talk, no matter how many words I use, I will never be able to accurately describe what it is like to be sick to someone who isn’t sick. And if we are all being honest with each other, unless you are also sick, you will never be able to fully understand my life. From my point of view, that is just a fact of life.
Words, words, words, they only mean so much. They are our man made attempt to describe complex things. If you really think about it, can words do justice to a sunset, or can you describe snow to someone who has never seen it. Of course you can describe it to them, but you can never describe it in enough detail for someone to fully understand a snowfall that they have never actually experienced.
So maybe my words are wasted, on people who will never understand. Or maybe, just maybe, my words do make a difference.
My words can’t make someone fully understand, but it is possible, that my words can help decrease the general lack of understanding about IBD that I have experienced. I may never be able to fully explain snow to someone who has never seen it, but I can explain it in enough detail so that if they were to see snow they would recognize it!
So maybe just maybe, if I use my words correctly, if I speak often and with purpose and clarity, I can increase awareness for this horrible disease that I live every single day battling. I wish my words could make you understand, but they can’t, because truth be told, chances are, you have absolutely no clue what it is like to have IBD and if that is the case, than no matter how many words I use, you will never understand.
I choose to use my words wisely, and to speak carefully when sharing about my disease, so that maybe you will choose to listen to my story.
The more you listen the less ignorant about IBD you will be, and as society becomes less ignorant about IBD it will become increasingly less difficult for those fighting these illnesses. What if, when I talked, people listened, liked truly listened. How would the world change?
This disease affects so many people, and from our point of view, it seems like the world doesn’t care. But what if the world started caring, how would things change? The truth is, whether you know it or not, you probably know someone who has IBD and the sad part is, you have never taken the time to listen to their amazing story.
To me, my story is who I am and part of my everyday life. To me my story is normal.
But to you, my story is an opportunity to learn about an illness that affects over half a million people.
And to you and I, if we work together, both talking and listening, my not so normal life has the capacity to change the world.