I believe in being the change you want to see in the world. And if no one else is doing it, then lead by example! Maybe people will catch on and you will start a movement that revolutionise the world!....every thing starts with an idea that generates a will and a will leads to a momentum… Or at the very least you will rest easy at night knowing you did what you think was right.
When people ask me what made me talk about chornic disease so openly and honestly I simply reply it never occurred to me not to! I have always been very open and honest about my life and when I was diagnosed with a inflammatory bowel disease (IBD) it was no different. What I did notice was that suddenly people didnt want to hear what I had to say. People changed the subject, bawked at the subject and I watched them squirm as they told me I coudnt talk about that, that no body wanted to hear it, that no body would want to know me if I kept talking about it. Well guess what happens when you tell me I cant do something? I consider it my obligation to prove them wrong!
I believe health should be talked about in normal every day conversations. I talk about health without fear of stigma because I believe the only way to remove the stigma is to carry on like it isnt there. I never talk about the stigma around crohn´s desease because I believe all it does is bring awareness to that stupid fucking word. Why do people judge others negatively? It comes from a lack of understanding. I think the key to eliminating this ellusive stigma is educating the world or at least those willing to be educated about what its like to be shitting yourself at the count of 3.
And I consider myself very lucky as my condition is quite mild, however I have shit myself more times that I can remember and I have had to deal with the mess in circumstances that were a bloody test of survival skills and improvisation. And many more times I had to empty my guts in random places as there is not always a toilet nearby.
But one thing is clear Mr. Crohn never stopped my for doing whatever the hell I wanted to do or go…I have traveled extensively and I have had tons of fun so well let´s deal with it as a ccircumstance and not a problem.
As I said I am very lucy as many people do really suffer from it and have their small intentestine operated being cut more and more everytime.
So I do just that. I tell my story and my experiences with Crohns iin the hopes that others might begin to understand what its like to suffer. And those that do suffer know they are not alone. People say to me all the time “you put into words things I´ve been trying for a lifetime to express/understand” that makes me feel so incredibly good. I believe the reason chronic deseases is so difficult to talk about is because we lack the vocabulary to talk about our weaknesses. How can we expect to have conservations about something we dont understand? No one is taught the language of opening yourself