Articles, Blog

Living with a Chronic Disease

December 13, 2019


Hello, so yeah. Um, 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, uh, how I deal with it and how I maintain a 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 luckier to be in a 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’s 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?’ What is also is great [is] 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 is 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 none the less, just by the fact that I have a 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 uh, 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’s- 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, then, 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, 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 of 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 would 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, “Wuuh!” ‘Cause there’s something unthinkably embarassing 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 there’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, ya know, diagnosed with Colitis I had one kind of life and then afterward, I had another kind of life. And those, both of those lives are good lives. Ya 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 may be 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 my pants there because it would’ve 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 LisaNova and Timothy Delaghetto and I, ya know that would have been really embarrassing. Uh, so I was like *boop* ‘I need to go to the bathroom.’ We were like at, ya know, a village like a rural village in Haiti and people were like, “Are you SURE you have to go to the bathroom?” Yeah. I’m sh- 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 kinda like there was, and I…and I did that. And everybody was super proud of me. They were all like, “Look at you poopin’ 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 ya 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 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 tons of amazing research being done right now in IBD and if you have another chronic disease there’s probably great research being done in that, as well. Um, that has- is showing great promise in that like, maybe I won’t live with this forever. And that’s, I’ve always got an eye on research and that’s something to, that, you know like, cheers me up when I’m feeling down. I especially go and read about it when I’m feeling 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 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, and so I exercise in the afternoon. And so you just like, keep your eye on things like that and, 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 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 negative way. But then there’s also, like, external, like, dealing with people who don’t or wont 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 can/would/should be blaming on your disease and 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 and like, like for me, I become very open about this with with my friends, like I will say, “Excuse me, I have a chronic disease.” and then I will 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 coworkers, if you can find that- 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 anyway, 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’m going to try and put myself…” and this is extremely hard when you’re frustrated…and in pain and anxious and embarrassed. Uh, but I see it as a kind of mental exercise, like I try and lift myself up a bit out of my body and try and, you know, understand the situation as fully as I can. You know it leads to a little bit of, like “I feel like I’m better than the person who is hating on me,” which is always, uh, it might-that might not be healthy, but it’s 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’m 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, uh I’m very lucky to have found her, um and hopefully she would’ve married me even if I had had Colitis when we got when 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 got in the way of our relationship or something that she resents me for, or anything, ever. Ever. And I, like 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… just so fantastic to have had her NOT like see this as a a barrier at all, and could not see it 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, that’s 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, there’s too many people to interact with specifically, and so, I apologize that 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 there’s all these things to wish weren’t the way that they are, but that’s never gonna be a fun way to live your life. And you’re never gonna feel good if you wish your whole life that you were born 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.

25 Comments

  • Reply Micah Horton November 1, 2019 at 9:52 pm

    I think it would be really interesting to see a collaboration between Hank and Hannah Witton. Both have colitis but seem to have similar but very separate experiences with their disease. I think it would be really cool to see them discuss the impact on them and their lives and the differences between their experiences.

  • Reply Mahasti Kia November 2, 2019 at 3:39 pm

    Just saw this one. 6 years late! Well I'm 52 now so it might look like I'm late for a lot of things, but that's how life is, you learn as you live. I learned I have a chronic pain some 6 years ago (4 years after its first attack. It was this mysterious pain shock hitting my face regularly and no doctor could tell what it was. Until Google did :)))
    Trigeminal Neuralgia is a nasty pain. No proper cure yet. There are groups for discussion and moral support (like the ~19.000 members in the Facebook support group).
    I had so many ups and downs trying alternative cures. Finally surrendered to the only medicine that works (Carbamasepine) and that makes me sleepy alongside so many other side effects. I can function for some 6-10 hours each day.
    And just as I was slowly accepting that my life will never be the same… Here you are bravely talking about your disease and your "new life"!
    Thank you! From now on I will call mine too a new life. It's different from before and I can't do many things I could… but it's my life. And I hold strongly to it.

    (I might've cried for an hour today waking up with a surprisingly strong pain jolt that lasted also an hour… but I'm now at my studio creating nice little ceramic tealight holders… so why stay with the bitter part if there are also sweet parts along the way? :))

    Thank you! ?
    With best wishes.

  • Reply Fran Rivera November 2, 2019 at 6:30 pm

    "I like to keep the burden of understanding on myself"

    I'll try to, too!!

  • Reply Geisly Conca November 3, 2019 at 5:05 am

    There are times it’s kind of impossible not to wish being healthy again. It’s not useful, but it’s ok. Being chronically sick is hard, but we want to keep living so acceptance is the only way… not much of a choice, so, it’s bound to be a bouncy road sometimes.

  • Reply Michi Melody November 3, 2019 at 1:17 pm

    I'm chronically ill and collecting new conditions like Pokemon since 2016 my new normal keeps changing. I really admire Hank's positivity. Having people not understand has been happening with me for the past 10 years. Invisible pain conditions, connective tissue disorders, gi issues, musculoskeletal issues… The list keeps going. I guess you just wake up every day and just make the best of what you can. Do what you can when you can and that's it.

  • Reply Em Custard November 3, 2019 at 6:50 pm

    I'm curently transitioning into a new normal. My inappropriate sinus tachycardia is getting worse despite medication, so it seems like I lose something everyday. Just when I get used to what I can do, I suddenly can't do it anymore. Rinse and repeat. I'm seeing a doctor about it to try and figure out how to stop it from getting worse, but it could take years to get answers.

  • Reply Zack Morrison November 4, 2019 at 4:12 pm

    Do you carry paper products/TP/napkins on your person, just in case? I picked up that habit both from having chronic sinus problems, but also from traveling abroad and having #2 issues unexpectedly. A back pocket full of paper napkins has made my life so much more convenient so many times! And thank you for your honesty about your condition, and thank you so very much for all the incredible content you produce!

  • Reply Maxim Motyshen November 6, 2019 at 11:20 am

    Try adapting to a new normal when your whole nervous system is inflamed and constantly producing anxiety, depression, fatigue… I’m just jealous of people who can at least do something in life and not be half- or fully bedridden. Suffering really puts everything into perspective.

  • Reply Cami Aurel Ondée Young November 6, 2019 at 10:08 pm

    Bless you Hank

  • Reply Some Person November 7, 2019 at 1:41 am

    DUDE SAME i had no idea you had it, Hank! O_0 i take Lialda and Azathioprine for it as well as kinda watch my diet. since my income is so low, i get my meds through SHIRESCARE. just an fyi. thanks for this!

  • Reply Hannah J November 7, 2019 at 10:19 am

    Hank I’m so happy and grateful that you made this video. I was diagnosed with Crohn’s as a teenager about 7 years ago now, and I’ve never had the “new normal” articulated to me so clearly — I’m SO going to use that to explain things to people from now on. I’ve definitely had a lot of moments in flare ups where I’ve despaired and felt like something has been stolen from me, but I also feel like it’s given me so much empathy, sensitivity and an ability to understand and connect with people on a deeper level not just who have IBD or other physical conditions but mental ones. I try very hard to be optimistic and I’m lucky that most of the time my brain has a positivity bias around most things, but I’ve just come out of a rougher patch, and this video made me feel SO seen. Thank you, Hank ❤️

  • Reply J W November 7, 2019 at 2:26 pm

    This was very encouraging to me, Hank. I've been dealing with GERD (chronic acid reflux) for over 3 years now and it's been daily pain pretty much, leading to giving up things I used to enjoy (alcohol, coffee, certain good foods, eating dinner, etc.). Thank you for the good thoughts.

  • Reply Justin Nordick November 8, 2019 at 6:36 am

    Thanks for the talk Hank! I acquired R.A before 30… it's not so easy with a new normal. This video gave me alot to think about. Feel better!

  • Reply Celtic Phoenix November 8, 2019 at 10:23 am

    I was born with IBS mixed and have struggled with it forever. I have tried different laxatives and found no relief. Eventually I found out that fried onions and chili cause my guts to cooperate but they make gas and can cause ulcers in my duodenum leading to my needing to take a daily antacid. Then I worked out that peppermint oil rubbed on my lower abdomen deals with the gas and cramping quite effectively. My GP still wants to confirm the IBS mixed diagnosis with a colonoscopy, but it is the least irksome of my chronic disorders (believe it or not) so I'm happy to wait for now.

  • Reply Technolocic November 10, 2019 at 8:56 pm

    "even if i shot myself in the head i would still poop my pants"
    hank green 2012

  • Reply Chris Boucher November 13, 2019 at 11:47 pm

    Hallo, sorry you have Ulcerative Colitis, I'm told it's treacherous at times.

  • Reply Chris Boucher November 13, 2019 at 11:59 pm

    Touched how grateful you are for your wife, and how candid you were with this whole situation. You're great man.

  • Reply Victoria Tucker November 15, 2019 at 9:25 am

    Would you do a fecal transplant? Im on a the low FODMAP diet.

  • Reply Frodo Baggins November 16, 2019 at 2:57 pm

    i'm 16 and i use a cane in my daily life because of chronic pain and hip instability. thank you for this, hank. i've found a new normal and it isn't bad, it's just different. i hope other chronically ill and disabled people can find that, too

  • Reply Elizabeth Lorusso November 17, 2019 at 12:34 am

    I just happened upon this video, and BOY! I am very glad I did! I was diagnosed with ulcerative colitis and Crohn's Disease about years ago. This has been my "new normal" since then. Pooping my pants, canceling plans at a moment's notice, etc. I developed a real social anxiety for many years, and became very comfortable with talking about gross stuff… like poop, and pooping my pants.

    Thank you for sharing this, back when you did.

  • Reply One Fine Fungus November 22, 2019 at 6:50 am

    Man I got diagnosed with UC at 13…that was really rough. It's also moderate though, and I've made strides, but it really screwed up my teen years even more than they already would've been.

  • Reply Adam Anti-pop November 24, 2019 at 5:53 pm

    You are my favorite YT personality and knowing this about your life really humanizes you. Opposed to you not being human?? But my lil sis has Ulcerative Colitis and almost had her colon removed last year. She is doing better now and I hope you have more good days as well. Thank you for all the content you have contributed over the years!

  • Reply Renee Laventure November 25, 2019 at 11:37 pm

    This is one of my favorite videos on the internet. Thanks Hank.

  • Reply Midnight Fandoms December 8, 2019 at 10:35 pm

    As someone who recently got diagnosed with UC, this was really relaxing and helpful. Thanks Hank.

  • Reply Broomfield Eric December 10, 2019 at 9:39 pm

    Just came across this. For some reason our society does not understand what it is to have a chronic disease. We live in a blame the victim society.

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