Skip to main content

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... 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. 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. 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. 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!


Popular posts from this blog

Overwhelming Nuance - Dancing Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease. 

Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.

The issue with "mind over matter"

I think about this pretty constantly. Is "mind over matter" really a thing? Is it really possible to outsmart your body? If so, is this a useful tool? Or is it a harmful lie? Is it just kind of a white lie? Also, (and this is what the whole thing really boils down to for me) is the mind actually separate from the body? Are we our bodies or are we our minds? Do the two have to be mutually exclusive? Or are the mind and the body actually one and the same?

My opinion on this subject has changed drastically and regularly over the years. Early on, right after my diagnosis, I was firmly ensconced in the pro-mind-over-matter camp. Without ever thinking about an alternative, ironically. Actually, this started long before I was diagnosed. For at least a year leading up to my official diagnosis, I experienced intense health issues and paid very little real attention to them. I just kept on going as best I could, thinking these symptoms would go away eventually. This, obviously, did no…

HAWMC Day 9: Keep Calm

Today's prompt is to make your own "Keep Calm" poster. 
I thought for a while about what I wanted to put on mine. Honestly, I think it's pretty hard to do better than "Keep Calm and Carry On." Seriously. It's catchy and it's to the point. Perfect. I considered the raunchy options: Keep Calm and Keep Pooping, Keep Calm and Break Wind. I considered the needy: Keep Calm and Call Mom (I mostly really love that this one kind of rhymes.) Eventually, though I ended up with this:

That pretty much sums it up. Just do your best. I think this is all any of us, chronic disease or not, can expect out of ourselves. It's something I'm trying really hard to keep in mind. Just do your best. That's it.

Oh, and have you guessed what my favorite color is yet?

What would your "Keep Calm" poster say? Make one! Share it in the comments! I would love to see it!