Sigh.
I don't want this corner of the internet to be solely about my disease. But there's something safe about this little monologue, and it seems to be worthwhile to try to package my thoughts into a conversation, one-sided as it is.
Honestly, I don't want to admit that Crohn's disease is a big deal or that it changes my life. Enter Episcopalian Mom Former Boss telling me that "Denial is not just a river in Egypt." She's right- and she wouldn't be that blunt if she didn't love me. I have a chronic disorder that can be downright dangerous if not managed properly (my new favorite potential complication: sometimes in Crohn's patients, ulcers can burrow into blood vessels in their colon and cause hemorhages), and it's not going away. But at the same time...I don't think she's right. People with Crohn's disease have a life expectancy close to that of the general population. I'm fortunate to have one of the milder forms of Crohn's. When people are dying of cancer, starvation, HIV, war, violence...my whacked out immune system isn't that big of a deal. There's a part of me that feels that it's selfish to acknowledge (even to myself) that my disease matters, never mind that maybe, it matters a lot.
If I look inwards, even for a moment, I see fear. Fear of the things that could go wrong. Fear of potential treatments and their side effects (immune suppressors? During FLU SEASON ?!) and their cost. Fear of what I might have to give up (in spite of the ulcers, I'd very much like to keep my colon, thank you just the same, and I really don't want to have to live under a bridge). I'm afraid of not being able to do my best, not being able to attack life (and research and writing!) with the same fierceness. I'm afraid of needing to rest...and paradoxically, of not being able to rest. Now, any change in appetite or bit of nausea makes me panic over what might be happening.
And then there's blame. Why doesn't anyone else in my family have this condition? If it's a combination of genetics, environment, and some sort of bacterial trigger, like my GI says...then what did I do, where did I put myself, that made this happen?
I am ashamed of not being adult enough to control my emotions. I am ashamed of not being scientist enough to comprehend that life threatening complications are rare. I am terrified that someone else will be hurt by this- that I will be inconsiderate of others or neglect my responsibilities because of focusing on my symptoms and inner chaos.
Y'know....let's go back to Egypt. Denial seems to work better than acknowledgement. It's less scary, anyway.
Honestly, I don't want to admit that Crohn's disease is a big deal or that it changes my life. Enter Episcopalian Mom Former Boss telling me that "Denial is not just a river in Egypt." She's right- and she wouldn't be that blunt if she didn't love me. I have a chronic disorder that can be downright dangerous if not managed properly (my new favorite potential complication: sometimes in Crohn's patients, ulcers can burrow into blood vessels in their colon and cause hemorhages), and it's not going away. But at the same time...I don't think she's right. People with Crohn's disease have a life expectancy close to that of the general population. I'm fortunate to have one of the milder forms of Crohn's. When people are dying of cancer, starvation, HIV, war, violence...my whacked out immune system isn't that big of a deal. There's a part of me that feels that it's selfish to acknowledge (even to myself) that my disease matters, never mind that maybe, it matters a lot.
If I look inwards, even for a moment, I see fear. Fear of the things that could go wrong. Fear of potential treatments and their side effects (immune suppressors? During FLU SEASON ?!) and their cost. Fear of what I might have to give up (in spite of the ulcers, I'd very much like to keep my colon, thank you just the same, and I really don't want to have to live under a bridge). I'm afraid of not being able to do my best, not being able to attack life (and research and writing!) with the same fierceness. I'm afraid of needing to rest...and paradoxically, of not being able to rest. Now, any change in appetite or bit of nausea makes me panic over what might be happening.
And then there's blame. Why doesn't anyone else in my family have this condition? If it's a combination of genetics, environment, and some sort of bacterial trigger, like my GI says...then what did I do, where did I put myself, that made this happen?
I am ashamed of not being adult enough to control my emotions. I am ashamed of not being scientist enough to comprehend that life threatening complications are rare. I am terrified that someone else will be hurt by this- that I will be inconsiderate of others or neglect my responsibilities because of focusing on my symptoms and inner chaos.
Y'know....let's go back to Egypt. Denial seems to work better than acknowledgement. It's less scary, anyway.
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