Kati (K): Hey everybody! I have a wonderful, special guest. Hank Green is here to talk with us about his experience with chronic illness. Hank (H): Hi Kati. How’re you doing? K: I’m good, how are you?
H: I’m good. Funny thing to say after you’re like “Let’s talk about your chronic illness…I’m doing great! No I am actually, particularly my illness has been pretty good lately.” K: So, just so I understand and, for those of you out there who don’t know, Hank suffers from… H: Ulcerative colitis K: Similar to Crohn’s?
H: It’s similar to Crohn’s, but Crohn’s is expanded…so, it’s an autoimmune disease; it’s an inflammation of your digestive tract. Crohn’s is basically all the way down – from the mouth on down. And it can really be, yeah, all the way, whereas colitis is just the colon. K: Okay.
H: So, people are like “What d’you mean? Tell me all about it!” So you kind of think of it as like, er, have you ever gotten hives?
K:…no. H: …or like an insect bite?
K: Yeah, or like rashes.
H: Yeah, so it’s like that, except … in my colon. And it can get bad enough that it then ulcerates and bleeds and is…yeah. K: Gotcha. So, yeah I read a little bit about it, so at least I kind of understood it – don’t google it and look at images at all! Very traumatising! I’m not a doctor and it’s very overwhelming. But, it sounds like one of the most common symptoms is bloody diarrhea. H: Yeah, that’s like the first sign. Well, generally if that’s happening, go and see a doctor! There’re lots of bad reasons why that could be happening. One of the mid level reason that isn’t like “You’re gonna die soon” is ulcerative colitis. K: Because I have a lot of viewers who suffer from all sorts of different ailments or chronic illness – ways that you best manage? I know you talked on your channel – and i’ll put the links to the videos I mention in the description box – about how it can be really hard to deal with it sometimes and everything from embarrassment, depression, frustration, all of those things. H: For me, I think that partially because it happened somewhat slowly and also, I had a very supportive environment and because I was older – colitis often happens to people younger than me – I was able to deal with the embarrassment more easily. It’s sort of like the first time you poop in your pants in your life — that’s never gonna be a good day — but like the 8th time it’s like “this is a thing that happens!”. K: This is a thing that happens — I just have to be more prepared! Extra pants and underwear with you at all times. H: Well, I think that the number one thing for me is just the lack of control. And you want to have that control. And you think you’re going to find a way to have it. And, if only I could control myself — I could control what I eat, I could get on this special diet that everybody says is good for colitis — and if only I could make myself do that, i’ll be okay…or if only I could make myself take this, like, fine I’ll take the medication that has the really bad side effects. H: Then I should be able to control it. But sometimes you just can’t. And those months when I’m trying really hard and it’s not really working — that’s the worst. Where it’s like, I can’t live the life that I want to live. H: Also, I get to structure how and when I work. The mornings are usually very bad for me so I often don’t go into work until the afternoon. And that’s just a ridiculous amount of privilege I have with dealing with this, but it’s that frustration and knowing that when I can’t live what I see as a normal life, the thing that I’m imagining is a normal life — isn’t normal for me. K: Yeah, your norm is going to be different. H: Yeah, that’s just not my norm(al) anymore. H: And that’s hard. But, it’s kind of almost a grieving process. It’s letting go of your normal life, and being sad that you lost it, and then finding a way to move on. K: Yeah, and I think that’s a message that a lot of people need to hear like…things are going to change in your life and there are going to be things that are out of your control and I think that, allowing yourself the time you need to grieve is important. it’s going to be different from everybody’s experience. K: I even have a video on grief and grieving. I talk about how odd it can be and how it can come and go. There’ll be days where it’s really shitty and others where you’re like “Oh, it’s pretty good – I’m feeling pretty good today!” K: And know that that’s all normal. Just make sure you give yourself the time. H: There are a lot of things that have gone right for me, and also some things which have gone wrong for me. And we’re all somewhere on an infinite number of bell curves — and i’m on the shitty side of the ulcerative colitis bell curve, but i’m on the really good side of the having-a-good-family bell curve. K: Yeah! And there’s a lot to be said about support systems. That’s something that I always encourage my viewers to create, or appreciate. We can create our own family (if family is something that isn’t supportive to you). But that can definitely be a great support. H: And knowing the way I try to maintain my digestive health, I also try to maintain my relationship health, because that’s so important. K: Agreed. H: Especially when you have bad things that you have to deal with. Knowing that I shouldn’t be trying to protect the people I love from this and trying to hide it from them, because it’s a pain for me to deal with and I don’t want to expose them to that BS — H: But knowing that they want to be there for me — and I need it. You can’t do it, like, if it’s hard, you can’t be the person that’s like “I can do the hard thing all by myself and nobody is going to know that it exists.” H: You have to maintain your relationships — for the people that you love and also for yourself. K: Letting people take care of your when they offer it up, I think, is something that can be difficult to accept but so wonderful once you do. H: Mhmm. And I don’t even feel bad anymore when — I don’t know how to say this without feeling like a total jerk. H: There’s a little bit of like “I have this disease. And it makes my life less good. And thus, my wife is really nice to me when i’m sick. She takes care of me and — and I like that. H: I like that she wants to do that and interacts with me in that way. I like to be taken care of. But for a long time I felt really bad about it, like, I felt I was kind of exploiting my illness. When I saw her being sympathetic toward me and I felt good about that sympathy — I feel K: You feel guilt?
H: Yeah, I feel guilt. It’s like “I’m feeling GOOD because of my illness right now, because otherwise my wife wouldn’t have a reason to have this sympathy for me right now and I wouldn’t have that feeling of like — this person loves me!” K: Yeah that’s a whole other… H: Like I need proof all the time! K: Everybody does! I feel like, that’s like the human condition. And that’s why we strive for connection and people and communication… H: The most important thing is the medication that I take. H: Finding good medication — the medication i’m on is a little but dangerous, so I have to make sure that I go in and have tests…
K: Oh, like blood levels…
H: (nods)…and all that stuff. H: And then, it was really frustrating in the beginning because I didn’t have health insurance…
K: Oh.. H: And it’s like $300 a month, and there was stuff that I could have been taking that I couldn’t afford at all… H: And then, when I finally got health insurance — thanks Obama — I was able to get this stuff that basically, when i’m starting to head down the slope (because it comes in waves, like flare ups and then you’re in remission), so when I see a flare up is starting to happen, I can take this stuff and it’s REALLY expensive. H: Like, to buy a 30 day supply of it is like $2500.
K: Holy moly. H: So I can take that stuff now and it’s like $20.
K: You’re kidding! H: Yeah, so I can take that stuff and take it for like 3-5 days and prevent myself from going into a flare up. K: So, are there things when you’re having a particularly hard time, other than family — have you ever been in therapy before?
H: Uhuh (no)
K: Do you go out and get social more? Are there things you do to try and help yourself feel better — or have people come over I guess is more comfortable for you. H: No, erm, I work.
K: Is that how you cope, kind of? H: Yeah. Yeah, I have this thing where I feel like, I don’t want to be useless. I want to be useful to people or the world. K: Uhuh.
H: So that makes me feel really good. And also, there’s this dumb thing I have inside of me where i’m like, if I can do it WITH this disease then imagine what I could do WITHOUT it, kind of thing?!
K: Yeah! H: I feel really good like, I can accomplish something even though i’m working around this disease. Of course, it being one disadvantage among the many advantages I have in my life.
K: Definitely. H: But I do feel like I — I don’t know why — but I tend to go into exploration of ideas or implementation of ideas…
K: Okay, so when you’re having a hard time… H: Yeah.
K: So YouTube gives you kind of a purpose(?) in a way. And I think that’s the cool thing about doing something that you’re passionate about, spending time in your life that fulfil you and make you feel better and that’s something — even as a 32 year old whose been working since she was 16 essentially — to realise that in the last 2 years, how much better I feel doing something that I love. I know that that’s a privilege that I hold which not everyone is able to. K: But if you can find something, regardless of whether you get paid of not, I think there’s a part of the human condition which — it’s important for us to do things which help us feel better. And fulfilled in some way. H: Yeah, for a lot of people (it doesn’t have to be, but) it’s producing in some way. And I think that that’s pretty rewarding. And i’m kind of sad that we live in a society where jobs like that aren’t very common. K: But I just want to thank you for taking time to talk about it. I know it’s not the happiest topic, but… H: No, but I’ve done it in a couple of places over the years and it’s very rewarding when I hear that people have been helped by how I think about this stuff. K: Yeah, and I think it is helpful — I know I hear it from a lot for my viewers — that they want to hear from people who are going through similar things. We like to know we’re not alone. K: That’s what my channel is about. We all suffer from the human condition in one form or another and the more we can talk about it, the less scary it can feel. H: Absolutely. H: And I feel privileged to have outlets to talk about it to people that will listen to me. K: Yeah, and I’ll leave links (in the description) to videos where Hank has talked about it before. Thank you again for your time. H: Yeah, absolutely. Thanks for doing what you do. K: Yeah, of course. I love it. I’ll see you guys next time, bye! H: And a lot of the things that I do, I feel like this is probably just me trying to have control over my life…[sirens, dogs barking]
K: …somebody being rescued.
H: …yes, important work. Camerman: Dogs in on it.
K: He’s so excited. H: That’s the way of the world.
K: [laughs] Subtitles by the Amara.org community