On Disease

Greetings to my brand new -itis.
In which John discusses illness, and his experiences with it, and the way we imagine disease.

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[cmmp]

How much better would our lives, our health and well-being be, worldwide, if we stopped attributing illness to morality? It’s stunning.

[dtyjkzu]

"Long story short I have a few problems" is an excellent title for a memoir

[joellea-b.]

"Disability is everywhere in history, once you begin to look for it, but conspicuously absent in the histories we write." Baynton, Disability & the Justification of Inequality in America

[Noah-yjuu]

illnesses being named for the body’s response to them is a fascinating thing i’ve never thought about. we really can never step out of the way we physically experience the world through our bodies.

[Clara-jdkj]

As a chronically ill person, the lack of literature and art about disease can make me feel removed from humanity. Sickness is so fundamental to my life, and I often feel alone in that because "universal" stories about the human condition don't tend to mention it. This video made me realize how absurd that is considering how human and common it is to be sick. Thank you for this video and for your great writing about illness and pain in The Anthropocene Reviewed!

[xoxoizzie]

Living as a disabled person during this season of the pandemic has brought on a hopelessness that I don't think I ever could have imagined. Watching the world actively choose to ignore the pandemic, the steps they can take to mitigate it, and the isolation it has forced many disabled people into is heartbreaking. But as a young person living with disability, I am not allowed to stop caring. I have to protect my body because I don't know if I'll be able to sustain myself with the longterm impacts of covid. I know that I am not alone in this hopelessness, I really desperately want to find community again. But I feel like all of my communities have left me behind, because they are tired of dealing with this disease, and in some ways, me.

[benaddictforlife]

As a wheelchair user with cerebral palsy, the "attributing Illness to a failure of ones body"rings so incredibly true. While I myself and me family don't see myself as "lacking" anything due to my disability, the outer world really really does hammer this home, especially in dating. Thanks for putting it into words so adequately.

[rainthedaymusic]

The lack of representation is especially true of chronic illnesses. Hanna Bervoets, a Dutch chronically ill novellist, finds the explanation for this lack in the story arch. Many disease-themed stories start with becoming ill and move towards either getting better, or dying. But chronic illness.. just doesn’t lend itself for those type of story archs, since the condition doesn’t change much through time. But Hanna Bervoets wrote a beautiful novel about chronic illness, the title of which roughly translates to Welcome to the Realm of the Sick. The book switches between conventional storytelling and a Greek-style epic journey, in which the protagonist explores this strange new world with a new, unfamiliar set of rules. In the end, the main story arch (in my experience) was finding acceptance in his new circumstances, and finding the beginnings of joy again in a disabled life.

As you can maybe tell, I'm pretty obsessed with this book because it's helped me a lot with acknowledging and accepting my own being disabled. I really wish there was an English translation of it.

[lockedwhisper]

As someone with a few chronic illnesses, I really appreciate this, especially your conclusion. Adjusting our narrative to the collective is meaningful and necessary - I'm really tired of fighting to heal while being told I'm inadequate for being ill/that it's entirely my fault. When it comes to health and illness, I find it fascinating that the first social instinct of someone's illness is to blame it entirely on the choices of the ill, rather than the collective forces of societal impact and (like you said) simply having a human body.
Thank you for adding insight and directing attention to this subject!!

[abbytheaardvark]

I'm a 27 year old, and I frequently feel very hypochondriacal because I've always had mild physical health issues, so having someone who talks openly about illness related things has really helped me feel more normal - I then had a stroke 2 weeks ago, and you really do start to question why we DON'T discuss illness more. Maybe people are afraid of illness because of the symptoms they can see up close in people, whereas war is so distant and obscure, and we're told that people fighting are heroes and that they're brave and so on, which I don't doubt, but we treat soldiers one way and hold cancer patients at arms length, as if we're going to get sick by being in the vicinity of them. I don't know where I was taking that point but it's interesting regardless - you talk about illness and human built systems, which really caught me, because the stroke I had was literally caused by the stress of life happening, and not by bacteria. Again I don't know where my point was going (again, had a stroke, brain says no to making sense), but I guess I'm saying thanks for the video, John!

[averycockburn]

This video deserves many rewatches. The fact literature doesn't address disease as much as it should may be a reflection of writers' fear of death and therefore disease AND/OR a society-level ableism that makes publishers and authors believe that readers don't want stories about sick people. Your books are a powerful testament to the contrary.
ETA: Sorry about the arthritis! I find dictation/Mac Voice Control helps hugely on the worst days.

[Amberthyme]

Disease is something that makes people feel vulnerable. When you “get sick” you feel a lack of agency. Love and war at least feel like you have some kind of control.

[sswiad]

I cherish my signed copy. Thank you for your sacrifice, John.

[a.harrington]

As someone who is recovering from a surgery for a treatable -itis, and who got diagnosed with a lifelong and chronic -itis in their 30s, I regularly get asked how I didn't know something was wrong before either was found. I had no words to explain beyond "That's how my body is, I didn't know it should be acting differently."

Expecting people to know their body isn't "acting normal" when they have no other experience is such an issue in the way we treat illness.

[mcgheebentle]

On writing about illness: I cannot recommend enough the writings and short stories of Flannery O’Connor. She was a foremost author of the Southern Gothic genre. Living in Georgia in the 40s and 50s, she also had several chronic disabilities that she eventually needed to live full time dependent on her mother and eventually succumbed to her illnesses. She makes it a point to make all of her protagonists “freaks” (her own word). They have disabilities or infirmities or are otherwise handicapped. The way she writes about these characters is sometimes almost painfully real and intensely “earthy” and people-focused. She was also a Catholic, and most of her stories involve an interesting “proto-magical-realism” (my wording). Check her out. I think everyone should read her.

[Beryllahawk]

This one hit hard, especially right now, as I'm struggling through being low income and every person in my family having medical issues - from my son's untreated ADHD to my husband's end-stage kidney disease to my own recent slide into diabetes. And every one of us is getting treated like we're criminals, as if we could just up and decide not to be sick, not to need help. As if we could "just work harder" to get out of the situation we find ourselves in. It's ludicrous that the collective choices around us have made so many lives so miserable, all in the name of one form of dogma or another.

[thecuriositas]

The human need to ascribe fault to illness has always fascinated me in a, "Oh look at the pathetic little humans trying to convince themselves that the universe is not indifferent & trying to force the world to make sense to them out of a cripling fear & anxiety" sort of way.
Illness doesn't care how you got them, they just are. They are the result of evolutionary pressures which molded them into multiplying via the route of least resistance, and that's all.
And I feel that humans do this to try and soothe a need to feel safe & shield themselves from the reality that this world doesn't care what you do it just is. "If I don't do X or y or z then I will be safe and those people who do get sick well that was their own fault so I don't have to spend the mental energy to try and help them or feel the guilt at choosing not to help them." It is all a coping mechanism to comfort us from the cold reality that we are just meat trying to keep existing & fight off those organisms which would use our bodies to further their own existences.

Humans want that comfort so bad, it turns us into monsters sometimes.

[bekahatkins]

This meant a lot to me because I’ve been collecting a lot of itises even though I’m really young and you talking about it makes me feel not alone and to not feel like a failure for my individual choices. Thank you for what you said ❤️

[Ami-lsvs]

“We have been invited to a very strange party where you get to have a consciousness but it’s made out of meat.” May be my new favorite quote of yours

[Nbxx]

I remember watching you sign TFIOS all those years ago and thinking surely this is gonna lead to some issue but then I was selfish and wanted a signed copy😂 Does that make me complicit in the development of the Ituses?