“If you’re always serious about your condition, it’s not fun.”
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Transcript for Normal Is Just the Setting on Your Dryer
I have three chronic, invisible diseases. By looking at me, you wouldn’t know I was sick. Every person who has Crohn’s, their symptoms are a little bit different than the other person. It’s a chronic illness. It’s an autoimmune disease of the gastrointestinal system. It can be from one end or the other end. Classic Crohn’s is basically where the small intestine meets the large intestine, there’s a place called the ileocecal valve, and it’s in that junction, that area, that you can get scarring, ulcers, your intestines basically eating themselves. And that’s what had happened with me. I had a section that was about twenty-five centimeters long that became so scarred and ulcerated that it swelled up to the size of a Nerf football.
The diagnosis of Crohn’s impacted my work life immensely. It’s really — it’s changed how I view things. I’m always looking for bathrooms. I’m always looking to find the easy way out of things in case… in case things get dicey. My job here at the university allows me the freedom to take care of my disease when I need to take care of it. When you have a chronic disease, you have a — you almost have a certain amount of power behind it because you can use that to your advantage if you really wanted to. I certainly try not to do it. It’s not a card I want to play with people. But you know, when you’re feeling really sick, and things are really bad, you don’t want to ever cry wolf and then have the end result be, you know, you actually having to talk about the disease when you don’t want to, when you’re really low. And maybe that’s the issue, is that you could say, ‘Oh, I’m not coming into work today because I don’t feel good.’ And then, the next week: ‘Oh, I’m not coming in today because I’m not feeling good.’ And you really weren’t sick, but then when you’re sick and cry wolf, people call you on it.
As we say in my family, ‘Normal is just a setting on your dryer.’ You know, there’s no normal with us. I couldn’t even tell you what normal is. You know, if someone asks you, ‘Well, how do you feel today?’ — that’s another funny story, is…and I learned this from my father, because people would go up to him and they’d ask, ‘Hey, how are you doing?’ or ‘How’s it going?’ And he would say, ‘Oh, terrible,’ and people would say, ‘Oh, great,’ and go on their way. And then, you know, thirty seconds realize—later realize, ‘Wait, he just said he was terrible.’ And he really wasn’t terrible, I think he was just sick of the nonchalant answers that people say: ‘Hey, how’s it going?’ ‘Good, you?’ ‘Yeah, good,’ and then we go on our separate ways. And I think that ties into me when people say, ‘Well, how are you doing?’ And I have to think, ‘Ok, how am I really doing? How much do I really want to tell you?’ I might ask them, ‘Do you really want to know?’ And they might say, ‘Yeah, I really want to know.’ And people who say that, well, they might get a more descriptive answer than what they had bargained for.