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Uploaded:2012-12-14
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A companion video to today's vlogbrothers video, which hasn't been uploaded yet (sorry, busy day) in which I talk about having a chronic, incurable, bastard of a disease (ulcerative colitis) and why I am so extremely lucky to have the support of friends and family and the internet community.

If you have IBD or want to help people who do, you can go to http://www.ccfa.org
Hello! So, yeah. Uh, I have ulcerative colitis. I'm making a Vlogbrothers video about it right now. From the perspective of people who don't have inflammatory bowel disease, but for people who do and for people who have other chronic diseases, to a lesser extent, I wanted to make a video. I've been asked for a long time by people who have IBD how I deal with it and how I maintain productive and a happy, healthy outlook on life. First, I will say I have what they call moderate ulcerative colitis, which I am very thankful for. Severe is often where you have to get your colon taken out, and that's unpleasant and comes with lifelong side effects as you might imagine. The colon does do useful work. And I'm even lucky to be in the situation where I can pay for my expensive medication. And I also have a job that allows me to run to the bathroom whenever I want. I'm the boss at my office, so if, during a meeting, I have to be like, 'I gotta go,' then everybody has to suck it. And of course everybody is very supportive of that, but just the fact that I, I'm the authority figure there means that, you know like, I don't have to worry about people being like, 'Well, that guy. He certainly can't sit through a whole meeting. What the heck is the point?' Which is also why it's great that I get to have lots of phone call meetings. I do lots of conference calls, and if you have ever been on the phone with me, there's probably a 90% chance that you've been on the phone with me while I've pooped. That's just a practicality for me. But nonetheless, despite the fact that I have a life that is well suited to my disease, I have had this disease for almost ten years now. Uh and I like to think that I have some intelligent things to say about chronic diseases in general and having ulcerative colitis or IBD in particular. There's a couple of stages of having a chronic disease. There's the uh, there's the being sick. Like suddenly you're sick and you don't know what's wrong, and that can be super terrifying depending on how severe your symptoms are. And then there's the getting diagnosed part, which comes along with this word chronic, which inside of it hiding there is uh, is this word incurable, which no one says out loud, but which is the worst word. It means that not only has your life changed, your life has changed irrevocably; it will never go back to the way that it used to be. Like you will never enjoy pooping again. That's not true. Some people are able to control their colitis very effectively. I am not one of those people. I... nope. At that point, uh it feels as if this disease has taken over you, that it is now controlling your life. And you can't fight it because it's in you. And it seems kinda awful that you now have to spend the rest of your life dealing with this terrible thing. To illustrate a point here, I have a bunch of friends who have just had kids. And when they first have this kid, it's like they are looking at it and they're thinking to themselves, 'How am I ever going to do all the things that I need to do in order to take care of this child? It is impossible. How will I ever do that?' And then an amazing thing happens: they do it. They just do because they have to, and that's the only thing that they can do. That is how I feel about pooping in my pants. Before I had colitis, that seemed like an impossible thing; how could you possibly do that? And now, I'm like, 'Well, I have to.' It's not like I want to; I have no other choice. Very literally. Like even if I shot myself in the head, I would still poop in my pants. This disease, if it has taught me anything, has taught me that things that once were unthinkable become, eventually, blasé. And, to a lot of people watching this, people are gonna be like, 'Oogh,' because there's-says something unthinkably embarrassing about pooping in your pants. To you, not to me anymore. People are like, 'Hank, why is there a pair of boxer shorts in your bag?' And I'm like, 'In case I poop in my pants.' And then it's just silence. Just, just stunned... what? And to people who have just been diagnosed with colitis, they might think like they can't imagine that they can be a person who would be okay with that. But that's the thing about being a person. I've been alive long enough to know that, you know, you go through life and your life will change dramatically, many times in your life. But, when I was, you know, diagnosed with colitis, I had one kind of life, and then afterword, I had another kind of life. And those, both of those lives are good lives. You know, I was happy back then, I'm happy now. No matter who you are, there will be times when your old normal isn't normal anymore. You will lose normal, and you will have a new normal. And that's what chronic disease is; it's a new normal. And it's maybe not as good as the old normal, but it's certainly better than a lot of things could be. I was once in Haiti, and I was at a meeting. And suddenly, I had to go to the bathroom very bad. And I really didn't wanna poop in my pants there because it would have been super embarrassing 'cause I didn't know anybody very well and it would have been really inconvenient too and probably like - I was like hanging out with Lisa Nova and Timothy DelaGhetto and I, you know, that would have been really embarrassing. Uh, so I was like, 'Boop! I need to go to the bathroom.' We were like at, you know, a village, like a rural village at Haiti, and people were like, 'Are you sure you have to go to the bathroom?' Yeah, I-I'm sure. Like, I-now. So I took the toilet paper and I went and I pooped in this pit toilet that I don't know whether or not there was cholera there, but it felt kind of like there was. And uh, and I did that. And everybody was super proud of me. They were like, 'Look at you, pooping in a pit toilet in a rural village in Haiti.' And now I'm proud of that. So yeah, that's what I call it. I don't know if anybody else uses this term, but I call it the new normal. And there's nothing wrong with the new normal because you get used to it really fast. This also happens when you like move to a different place or some, some big thing happens in your life. And, and like things, living in a way that would previously have been unthinkable to you becomes very, very normal. I think it's really good if you have more experience with that because the more experience you have with your life changing dramatically and quickly, the more able you will be able to, you know, handle those changes that come in the future. And they will come; they always do. But additionally, uh, for young people especially, uh it is important to note that it's not like a hopeless cause when they say like chronic or incurable. That doesn't mean that it will always be incurable, and there's ton of amazing research being done right now in IBD and, if you have another chronic disease, there's probably being great research being done in that as well. Um, that has-is showing great progress, and that like maybe I won't live with this forever. And that's why I've always got an eye on research, and that's something to-that-to, you know like, cheers me up when I'm feeling down. I especially go and read about it when I feel particularly bad. And it helps me like realize that I need to take care of myself because I need to be ready whenever the cure is available to like have a good, strong body to be able to continue like having a new new normal, a better new normal. And also I keep my eyes open to like seeing what helps me feel better. Eating later in the day or eating smaller meals, that works really well for me. Exercising too helps a lot, but I can't exercise in the morning 'cause that's when I sort of feel worse, so I exercise in the afternoon. And so you just like keep your eye on things like that and, you know, I sort of am more at the whim of my body than I feel like a lot of people are. So I, I have been able to design my schedule around that and, and sort of have like nearby the toilet computer time until the afternoon. And then, uh and then I can go do places, I can go do places, I can go do things and go places and like wait in lines and do things that, you know, normal people don't have to worry about. But, if you have IBD, you know what I'm talking about. So there's these internal things like anxiety and depression that come along with your life changing significantly in a, in a negative way. But then there's also like external, like dealing with people who don't or won't understand you or your disease, or you're too embarrassed, or you don't like feel like, you feel like it's an invasion to be talking about what's going on uh with the inside of your body, which I totally understand. And they blame things that are, you know, you could-would-should be blaming on your disease; they blame them on you. And that's, you know, that's difficult. And to that I say you can try and be honest, and you can try like, like, for me, I've been, become very open about this with, with my friends. Like I will say, "Excuse me, I have a chronic disease," and then like walk out of the room. Pardon my chronic bowel disease. And I encourage you to do that at least with your friends and family, if not also with your co-workers, if you can find that like, like, like a way of communicating that. But in general, there will always, always, always be hard relationships in your life. And no having a chronic disease isn't gonna make that any easier, but it might not necessarily make it that much harder. I mean, the people that you're gonna have the hard times with, are the people that you'd have the hard times with anyways because they, you know, they're selfish. But I like to keep the sort of 'burden of understanding' on myself. Like I like to try and, and like just be really pious about this, and say like I am gonna try and put myself - and this is extremely hard when you're frustrated and in pain and, and anxious and embarrassed uh - but I, I see it as kind of a mental exercise. Like I try to lift myself up a bit out of my body, and try, you know, understand the situation as wholly as I can. You know, it, it leads to a little bit of like I feel like I'm better than the person who is hatin' on me, which is always... Uh, it might, that might not be healthy, but it probably, it's better than the alternative of just screaming at them. And also, I've generally found that that leads to better relationships. I am very lucky to not have to worry about that stuff so much. I mean, Katherine is of course the most supportive person you could ever hope for, to have in a marriage. And um I'm very lucky to have found her, and hopefully she would have married me even if I had had colitis when we got, we-when we found each other, but um she stuck with me through it. I have never felt like it has been something that has gotten in the way of our relationship, or something that she resents me for, or anything ever, ever. And I, I honestly think that it's because she doesn't. Like she, she doesn't see that - and I'm like getting a little bit teary now. But it's so fantastic to have had her not like see this as a, a barrier at all, like not see this as a challenge even. She just sees it as like she's sad sometimes that I'm in pain, but it's-I've been very, very lucky. So yes, it can be depressing and anxiety-inducing and embarrassing to have any chronic disease, specifically inflammatory bowel disease. But um, there are people who understand what you're going through; there are support groups online. I can't help people individually. I wish I could, but I, I even when you narrow it down just to people with IBD, and-there's too many people to, to interact with specifically. And so I apologize, but I can't do that. Yeah, your life is gonna be a little bit different than someone who doesn't have a chronic disease, but your life would be very different if you were born in a different country, or if you were born with a different skin color, or if you were born with a different amount of money in your bank account. Like always things to wish weren't the way that they are. But that's never gonna be a fun way to live your life. You're never gonna feel good if you wish the whole-your whole life, that you born with a, with an extra zero on the end of your family's net worth. But most of us don't spend time doing that because it's not worth spending time doing. Just like it's not worth spending time wishing you didn't have a disease that you have. So take care of yourself, take care of your relationships, and I hope uh that you feel better and that this video was of some use to you. Goodbye.