I recently decided to participate in National Novel Writing Month. I'm writing about, you guessed it, a young woman coming to terms with her chronic illness. The novel itself isn't coming along very quickly, but the process of writing has inspired some interesting thoughts about Crohn's and my personal process of dealing with my disease.
So, I've come up with this list of the first things they should tell you when you're diagnosed. I'm not sure who "they" is. I'm not even that concerned with who it is. The idea is more about the message than the delivery. Here's what I've come up with.
The first thing they should tell you...
...is that this isn't going away, your life will be different from now on.
I know, that's inherent in the word "chronic." But I don't think that sinks in for a while after diagnosis. For me, and for many others, it took at least two major break downs to finally understand that something absolutely had to change, and permanently. I understood that I would always have a disease, but I did not understand that this meant I had to alter my life. I thought as long as I wasn't in major flare, my life could go on just the way it always had. Essentially, people need to understand from the get-go that Crohn's is a lifestyle. You will deal with it on a daily basis. Each day will be different. Some will be amazing, some will be hellish, but it will always be there. Don't ignore it.