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Uploaded:2016-07-08
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I was surprised how intense this script came out. Apparently this is something that's been stewing in me for a long time. I didn't realize it until I got really annoyed at a friend for saying something that I should have seen as thoughtful and kind. It's funny how these things can sneak up inside of you.

Since I didn't actually check in on my health in this video, and I'm sure people will be curious, I do feel better. My sinus headache is persistent, but the cough is chilling out finally (which is good because I separated some connective tissue from my left lower rib, which is making the coughing hurt pretty bad.)

The colitis is under control after an alarming Dayquil-related symptom spike. My medicine is working very well for me, even if it makes my immune system less good at its job.

Thanks for your support of me, but more for supporting the people in your lives who need it more than I do. I have more support than any one human deserves :-)

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Good morning, John.

I'm still sick! This is annoying. A thing that I've noticed now that I've had this happening for, like, two weeks, is that when you are sick, people give you advice. I've actually noticed this for years when it comes to my ulcerative colitis. A lot of people seem to have a cure in their back-pocket. If only I'd go gluten-free, or stop eating grains, or go paleo or vegan, or stop eating short-chain carbohydrates, or fast for three days and then eat an apple. Seriously, it was a whole thing, and it took like half the party for him to explain it to me.

And over the years, I tried a lot of those things and none of them worked. What worked, was taking the medicine that my doctor gave to me. And over the past week, people have been saying completely normal things to me, like "Get some rest, man" or "Take it easy. Stop stressing. Sleep more." And I've been a little been shocked by how annoying this is. Not because it is annoying, like, it's fine, it's a totally fine thing for somebody to say, but it's tapping into this thing that I have with my ulcerative colitis. After years of dealing with my chronic illness, that I cannot cure, and having people tell me ways that I should be able to cure it, what I'm hearing is not, you know, "Take it easy. We support you." Instead I'm hearing, "I have the secret to your wellness and if only you had the courage and fortitude to implement it, you would no longer be sick." And one step further from that, what's tickling my subconscious here, is this idea that my illness is my fault. I know that my chronic illness is pretty insignificant compared with what a lot of other people are dealing with, but I think this is probably an experience that a lot of people have.

When you tell me, a person who has lived with ulcerative colitis for more than a decade, that you have the secret to my wellness, I cannot help but dislike you. Like, if that's my first impression, and sometimes it is, I'm like, I'm out. And look, maybe this is the one weird instance in which you are the one who was right and maybe I'm missing that opportunity to finally make myself better but I've heard this line so many times with so many different fads and so many different pieces of anecdotal evidence that all I can hear, when people say this to me, is: "Your illness is your fault."

Because we want it to be something's fault, right? Because if it's not the fault of anything, then it has to be just weird, random, chance. And that's what chronic illness is. It just freaking happens! To good people and to bad people and to champion athletes and people who drink too much. I've dealt with my illness by allowing myself to accept it- by admitting to myself and accepting that my life is different now and that my body is different now, and I have to live inside of this body that sometimes hurts itself.

Science will keep marching forward, and someday maybe there will be a medicine that I can take that will control this disease without making me sick in other ways. And yes, science shows that my behavior does influence the expression of my disease and so does my experience of my disease. And so I do need support from people to help me make the decisions that my doctor says that I should make and that I have decided for myself that I want to make. But I also can't avoid the truth that this is the body that I'm in and I have to accept that, like, among the many probabilities that were cast, that mostly came up in my favor, I rolled bad on auto-immune diseases. My brain has tried to tell me over and over again that this is my fault. I have searched for every possible way, subconsciously and consciously, that this is a thing that I did to myself. And that's a crappy feeling and it is re-emphasized every time someone tells me that there's a simple thing that I could do to make myself well.

I want to say here at the end of this video: I'm doing fine, I'm not angry or frustrated at my friends or at you. I have a loving, supportive group of people that are fantastic, in my life. And I do my best to understand that when people are saying these things, they're not trying to make me feel what I'm feeling. So I just try and accept that support for what it is, rather than how it's being expressed specifically. But if you want to be supportive to someone who's sick in your life, make sure that you recognize that it's very possible that they are struggling right now with this feeling that they did something to cause or to deserve the illness they have. Even if objectively they understand that that's completely untrue, when we say "There's an easy way out of this" and there's not, what we're making people feel, is that this is your fault, when it's not.

John, I'll see you on Tuesday.