This time last year I was still keeping a cute little journal of my symptoms, back when I would go to the health center after throwing up for eight hours (again!), just to have one of the young doctors listen lamely to my list of ailments and advise “maybe try not eating dairy?”. And I would cry even as I agreed to try it, because I knew that whatever was wrong with me had more to do with ice cream and cheese.
This time last year, “Crohn’s and Colitis Awareness Week” wasn’t even on my radar. This year, I am very, very aware. Here are a few more things I’m aware of this week and this year.
In our era, certain illnesses will be more common. There is no denying that something out there is making us sick: rates of IBD, autism, auto-immune disorders are all skyrocketing. This is troubling, to say the least. We haven’t figured out what it is, the medical establishment probably isn’t going to either (not when they could be putting their efforts into creating expensive medicines), and we’re stuck with it.
It’s tempting to get all “woe is me” about this, but then I remember there are other eras in which diseases were common…diseases like, say, smallpox, or polio.
This is not anyone’s fault. When I was first diagnosed, I read a number of reports claiming that kids who are raised in hyper-clean environments are more likely to suffer from immune disorders as adults. I laughed and laughed and laughed some more, because there are few descriptors less accurate than “clean” in describing my childhood.
So it’s not my parents fault for the way they kept their house or for drinking out of plastic water bottles or for having me vaccinated (actually, I quite enjoy not having had diphtheria or mumps). It’s not my fault for being vegetarian or my grandparents’ fault for using lead paint. On my whiniest days I blame God, but even that feels a little lame.
I can rely on people. Oooh boy, do I not like relying on people. But when you’re running to the bathroom to dry heave every 20 minutes, or your entire abdomen is on fire with pain, you have to rely on people. And the people in my life, at more than one job, proved what I knew all along: I work with some of the best colleagues on the planet.
My parents, my boyfriend, my friends, my colleagues: I felt like I put them all in a position that I never wanted to put anyone in. I don’t want people to worry about me, I never wanted people to have to take care of me or look out for me. But we can’t always get what we want, and everyone rose to the challenge.
Sometimes life is hard. Earlier this fall I was having moderate pain and nausea twelve hours before I was supposed to run a half-marathon. I was at my parents dinner table, eating as much yogurt as I could get down while the rest of the family carbed up on my behalf. At some point during dinner I quipped with no self-pity “Life ain’t fair” and my mother responded just as matter-of-factly: “We never told you it was”.
That’s certainly true, but my response was “you never gave me any evidence to the contrary, either”. I lived a fairly charmed life for my first thirty years (and for the most part, I still do). In my world, if you worked hard and were good to people, things worked out for you. Disappointments were minor and tragedies were few. Intellectually I knew that sometimes sh!t happens, but I didn’t know it in my bones the way I do now.
I am not defined by my health. For all the physical trauma my body went through during the worst days I’ve had, the hardest hit I took was the diagnosis. I went from normally-healthy-woman-who-happens-to-vomit-all-the-time to Crohn’s sufferer. I felt like my identity completely fell apart.
In truth, it was just another label falling away, revealing more of me in a way that was frightening and painful, but ultimately more honest.
I wish I weren’t sick. I wish life would go back to the way it was. But it seems that this is part of my path now, and my illness isn’t going anywhere. I’m aware of this, too.