Hank Green on living with a chronic disease

I discovered this video by Hank Green (of Vlog Brothers fame) last night, and had to share it here. I used to watch Hank and John Green's videos religiously, back in the Brotherhood 2.0 days (this will all be gibberish to the non-Nerdfighters out there). But then there was just so much stuff on the internet that it became impossible to keep up on everything I wanted to read and watch, so I just catch the odd video here and there... All this to say, somehow I missed this video. 

Last night I was feeling super duper down on myself and life because of how shitty and sick I've been feeling lately, and was reading some internets, and down the internet vortex I went, and I ended up at this video, and sometimes the internet is just wise and leads you to exactly what you need in that very moment. I hope you'll watch it, because I relate a ton to what he says.

Just in case you don't or can't right now, here's a chunk of my favourite bits towards the end:

I sort of am more at the whim of my body than I feel like a lot of people are. I have been able to design my schedule around that, and sort of have nearby the computer time until the afternoon, 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.

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 [things]... Like, dealing with people who don't - or won't - understand you or your disease. Or you're too embarrassed, or you don't feel like it's an invitation to be talking about what's going on with the inside of your body... which I totally understand. 

And they blame things that [they] should be blaming on your disease, and they blame them on you. And that's difficult, and to that I say... you can try and be honest, and you can try... like for me, I've become very open about this with my friends. Like, I will say, "excuse me, I have a chronic disease," and then 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 a way of communicating that. 

But in general, there will always be hard relationships in your life, and no, having a chronic disease isn't going to 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, you know, they're selfish!

But I like to keep the burden of understanding on myself - I like to try to just be really pious about this and say, "I'm going to try and put myself...[in their shoes - ?]" - and this is really hard, when you're frustrated, and in pain, and anxious and embarrassed... 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 understand the situation as fully as I can... It leads to a little bit of like, I feel like I'm better than the person who is hatin' on me - that might not be healthy - but it's better than the alternative of just screaming at them. [And] I've also found that that leads to better relationships.

There was something so comforting about listening to Hank talk about how he copes with having a life disrupting bowel condition - I guess I knew he had Ulcerative Colitis, but I'd never really heard him talk about it before. Definitely just that whole "there is someone else out there who knows exactly what it's like dealing with being at the mercy of your digestive system" feeling. But also, he reminded me a bit that it's important to actually say what's going on sometimes, rather than just coping alone or internalizing all of it.

I've really clammed up over the past year or so, about what's been going on with me personally, health-wise. Sure, I still write more overarching things about living with chronic illness, but aside from the odd post about some specific or obscure part of what's going on with me (that I write for the benefit of other people out there searching for info), I've been pretty quiet.

And my being more private about specifics has been for good reason - the more I talked about what was going on with me physically (which was hard not to talk about initially, because it's kind of taken over my life at certain points in time), the more I alienated hoards of people in my life, many people who I trusted and considered close friends. I never expected to feel the sort of judgment, shaming, and isolation that I've experienced since I stopped functioning well enough to keep up the facade that I was in some way still "normal". 

I've also had a significant amount of conflict over the past couple years with my immediate family (which for me is my parents, since I'm an only child), which has been linked in direct ways to my health problems. It's something I have found exceedingly difficult to talk about publicly, mostly because I still feel some kind of obligation to protect them (which I know, is kind of twisted). But because of this conflict, I've been even more hesitant to talk publicly about the specifics of my health where I have no way of controlling who can access the information, or how it will be manipulated in ways that only further complicate my life and cause me more unnecessary stress.

I guess I started to feel like the risks of continuing to talk about my health stuff really came to overshadow any benefits of it. But that's kind of messed up because I've always been an enthusiastic proponent of speaking your truth around chronic illness, and also keeping quiet allows people to assume that everything is going fine, which isn't true. (I've never quite understood why the default assumption is that silence = fine, but that's a whole other topic.)

Anyway, I need to spend some more time figuring this stuff out, cause it's not really a well formed idea yet, but I guess this is just to say, I'm thinking about it.

Would love to hear from you folks out there, on the video, on how you've found talking about your illness has impacted your life (negatively or positively), or on any other things this got you thinking about... I love getting your comments (especially on here, where they don't just disappear into the ether after a day), so don't hold back if you want to share!