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The First Thing They Should Tell You

It's been way too long. Sorry about that. Life post-graduation has kind of thrown me for a loop. But I'm back and I'll be writing more often now. So, without further ado...

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.
  
...is that this will alter the way you conceptualize your "self." Let it. 
Crohn's will change the way you think of yourself. That is okay. This does not mean that you are not you. Let Crohn's become part of your identity. This does not mean that Crohn's is the only thing that makes you you, but the "my disease will not define me" school of thought can be a really effective way of separating your disease from yourself. Life gets easier when you understand that you don't need to be ashamed of your disease, you don't even need to hide it. It can just be there, a part of you. 
...is that you must ask for help when you need it. 
This is your disease, but that doesn't mean you have to go it alone. Cultivate a support system. Do not worry about getting lost in self-pity or depending on others to do everything for you all the time. You probably won't. Let yourself be open about problems you are having, and let others be there to comfort, love, and, yes, sometimes clean up after you. It happens. 
...is not to think of your body as the enemy. 
I know. It's hard. The darn thing keeps attacking itself and refuses just be calm and behave. Because, as I said, your disease is part of your "self," when you foster those feelings of resentment, you eventually start to do some serious damage to your self-worth. This, just like all of the things I've said so far, is a process. For me, naming my colon was when I began to let go of the harsh feelings I had been hanging onto so tightly, stopped blaming my body for working against me and began working with it. I know, it feels weird at first, but this naming tool has been incredibly helpful for me, and, bonus, has made it easier for me to talk about my disease with others. It's all about acceptance and listening to your body. Letting it tell you what it needs instead of getting angry at it for needing anything at all.

So, having written all of this, I realize that some random third party coming up to you shortly after diagnosis and laying out this list of things that you simply must know is not really an effective way of communicating anything, let alone valuable life lessons. Honestly, I kind of think these are things that one has to come to on their own terms. They can not be taught. It is just kind of interesting to think about.


If you could give a newly-diagnosed Crohn's patient a nugget of advice, what would it be? What if you could go back and tell yourself something shortly after being diagnosed? Let me know what you think in the comments!

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