#The Invisible Kingdom: Reimagining Chronic Illness

[rubypomegranates]

“I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.”

Meghan O'Rourke “The Invisible Kingdom: Reimagining Chronic Illness”

[lateonsetemo]

get to know you game! answer the questions & tag folks you want to get to know better!

thanks @nova-leaf for the tag <3

last song listened to: listen up - oasis (mtv unplugged version)

currently reading: the invisible kingdom- meghan o’rourke (it’s been a bit since i picked it up so i may need to start fresh) (it’s about reimagining chronic illnesses by investigating their invisibility)

currently watching: doctor who. very tumblr of me but it’s my first watchthrough and my best friend got me hooked on it

currently obsessed with: obviously atla/tlok but less obviously gravity falls has had a chokehold on me recently. maybe obvious on my blog but not irl! also my beloved kitty marvin. he deserves the world and i will find a way to give it to him.

no-pressure tags: @dykevirgo @ducks-and-dinos @decentmonster

& anyone else feel free to hop in!

[gideonthefirst]

January Books

bolded is favorites, [x] is least favorites

fiction

Caribou Island by David Vann

Trust Exercise by Susan Choi

A Ballet of Lepers: A Novel and Stories by Leonard Cohen

The Deep by Rivers Solomon

Harrow by Joy Williams

Slaughterhouse Five by Kurt Vonnegut

nonfiction

The Invisible Kingdom: Reimagining Chronic Illness by Megan O'Rourke

Kissinger's Shadow: The Long Reach of America's Most Controversial Statesman by Greg Grandin

I Embrace You With All My Revolutionary Fervor: Letters 1947-1967 by Ernesto Che Guevara

The Art Thief by Michael Finkel [x]

Kill Anything That Moves: The Real American War in Vietnam by Nick Turse

Beeswing: Losing My Way and Finding My Voice 1967-1975 by Richard Thompson

Havana Nocturne: How the Mob Owned Cuba & Then Lost it to the Revolution by T.J. English [x]

Pathogenesis: A History of the World in Eight Plagues by Jonathan Kennedy [x]

other

Just Give Me a Cool Drink of Water 'fore I Diiie by Maya Angelou

The Crown Ain't Worth Much by Hanif Abdurraqib

[dilfsisko]

(Image ID: Three pictures of three different library books. The first is the graphic novel Buffy the Vampire Slayer: Hellmouth. The second is The Terror, by Dan Simmons. The third is The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke./End ID)

Library haul

[snackerdoodle]

books read in 2024

I post them here so I don't lose them if something happens to the note on my phone. Also because I’m nosy and fully support other nosy people.

1/10 Frankenstein, Mary Wollstonecraft Shelley 

1/24 Dopamine Nation: Finding Balance in the Age of Indulgence, Anna Lembke (👎)

1/31 The Invisible Life of Addie LaRue, V. E. Schwab

2/18 A Power Unbound, Freya Marske

2/21 Bookshops and Bonedust, Travis Baldree

3/1 The Goblin Emperor, Katherine Addison  +2

3/8 The Witness for the Dead, Katherine Addison +4

3/10 The Grief of Stones, Katherine Addison +4

3/10 Strangers, Taichi Yamada (trans. Wayne P. Lammers)

3/11 Own Your Space, Alexandra Gater 

3/17 St. Juniper’s Folly, Alex Crespo 

4/5 Mislaid in Parts Half-Known, Seanan McGuire

4/19 Wayward Lives, Beautiful Experiments: Intimate Histories of Social Upheaval, Saidiya Hartman

4/23 Catholicism: journey to the center of faith, Robert Barron 

4/28 Pride and Prejudice, Jane Austen 

4/29 If not, winter: Fragments of Sappho, Anne Carson

5/3 Joan of Arc: A History, Helen Castor 

5/7 The Angel of the Crows, Katherine Addison

5/14 Beaten Down, Worked Up: The Past, Present, and Future of American Labor, Steven Greenhouse 

5/21 Witness for the Dead, Katherine Addison (hard copy, with short story this time) +2

5/25 The Grief of Stones, Katherine Addison (hard copy this time) +2

5/25 Things You May Find Hidden in My Ear, Mosab Abu Toha

5/29 Dracula, Bram Stoker

6/24 The Invisible Kingdom: Reimagining Chronic Illness, Meghan O’Rourke

6/26 I’m Glad My Mom Died, Jeannette McCurdy 

7/1 The City of Brass, S. A. Chakraborty 

7/1 Der Katze ist Ganz Egal, Franz Orghandl (german kids book, audio format. Listened while working. Understood some, missed some. Overall got the gist of the story.)

7/5 Museum Depots: Inside Museum Storage, Stefan Oláh and Martina Griesser-Stermscheg (read the English text, not the German)

7/6 Art Students League of New York on Painting: Lessons and Meditations on Mediums, Style, and Methods, James L. McElhinney and the instructors of the Art Students League of New York (skipped half of Knox Martin interview because he annoyed me)

7/17 Master and Commander, Patrick O’Brien

7/18 Malverina: Ich möchte eine Hexe sein, Susanna Isern 

7/24 How to Excavate a Heart, Jake Maia Arlow 

8/6 The Friendly Orange Glow: The Untold Story of the PLATO System and the Dawn of Cyberculture, Brian Dear

8/22 The Kingdom of Copper, S. A. Chakraborty

8/31 La bibliothèque des rêves secrets, Michiko Aoyama

9/4 Unmask Alice: LSD, Satanic Panic, and the Imposter behind the World’s Most Notorious Diaries, Rick Emerson 

9/9 The Falcon at the Portal, Elizabeth Peters

9/17 Long Live Evil, Sarah Rees Brennan

10/3 Devil House, John Darnielle

10/8 All’s Well, Mona Awad

10/14 “You Just Need to Lose Weight” and 19 other myths about fat people, Aubrey Gordon

10/17 The Paris Apartment, Lucy Foley

10/22 Elatsoe, Darcie Little Badger

10/25 A Marvellous Light, Freya Marske

10/28 A Restless Truth, Freya Marske

11/7 Post Captain, Patrick O’Brian 

11/10 A Power Unbound, Freya Marske

11/24 Weaponizing Conspiracy Theories, Eirikur Bergmann

11/27 Interpreting LGBT History at Museums and Historic Sites, Susan Ferentinos

12/7 The Origins of Totalitarianism, Hannah Arendt

12/11 Whose Body?, Dorothy L Sayers 

12/11 Moby Dick, Herman Melville (through Whale Weekly)

12/13 How to Break up with Your Phone, Catherine Price (combination helpful and obnoxious :/)

Failed out of:

The Memory Librarian, Janelle Monae

Cujo, Stephen King (too sad ;-; can’t drive while listening to audiobooks that make me cry)

[bloodbankzz]

i just dropped the invisible kingdom: reimagining chronic illness at 83% read because i am fucking furious with it. within the first few chapters i immediately had a bad feeling about her penchant for pseudoscience and i shouldve trusted my fucking intuition. instead i foolishly thought she would tie it all into how desperate populations can fall into the hands of grifters under the uncaring gaze of a "healthcare" system under capitalism and in the usa especially by the end, and FOOLISHLY, FOOLISHLY, FOOLISHLY recommended it TO AN ABLED PERSON to help understand the mental toll it all took even in the most ideal of circumstances. just to fucking watch this woman pile on dubious science after dubious science while she jet sets AROUND THE FUCKING WORLD spending what would easily be hundreds of thousands of fucking dollars AND NEVER EVEN BEING FIRED FROM HER JOB DUE TO DISABILITY? she just keeps her fucking dream princeton fuckin writer job the whole time. interviewing quacks because she was scammed, and she was scammed a lot. and im sorry to her for that. but not really because fucking ozone blood whatever and flying to england for fecal transplant and supplements and supplements and supplements and obvious orthorexia were clearly very within her budget. can you imagine a world where you rack up thousands and thousands and thousands in credit card debt and it just ends up not fucking mattering? oh my god i could be mad for so long at how much this rich woman got to see top doctors (without insurance!) and experiemental procedures and this and that and that and that with EXTREMELY sketchy conclusions because ~ shes a poet at heart ~ (?????????) AND THEN PUBLISH IT LIKE SHE SPEAKS FOR ANY OF US? reimagining chronic illness?????? for who????? no i can QUITE easily imagine that rich people do indeed have the ability to buy their way into health no matter what stupid path that leads them through. that happens all the time! remember the son blood infusion guy? god. im so fucking angry and its all of this but i really was gonna fucking put up with it and just add caveats but do you know what she fucking does?

after months of antibiotics, her lyme disease is seemingly cured. great for her. she reflects on how freaking awesome it is to have a body that works again! my body was broken and now its fixed and i can have a baby. im human again.

now this whole time, as someone who has been sick my whole life and will never have the money or life she has, i had been listening, and feeling seen by her emotional plight (if extremely skeptical of her... favored... choices?) but the whole time i will not lie to you i was simmering with this now exploding anger due to a deep envy. i am envious of a lot of people though, specifically because of my disabilities. so i was swallowing it. she got to make it to adulthood before she was dying. she got to establish and keep her career of choice. she could see any practioners she wished. i was so painfully jealous, but again, i was still recommending it on the basis of "this is how bad it is for the luckiest one of us." the betrayal i felt, when this book that kept SAYING it was about finding the ability to live in uncertainty brought on by mysterious illnesses, which i put up with through so many fucking red flags, ended with her literally fucking fine? pretty much fucking cured of the big thing causing her problems? AND IT TURNED OUT? THIS WHOLE THING? WAS ABOUT HOW MUCH IT SUCKS TO EXPERIENCE CHRONIC DISEASE FOR SOME YEARS AND HOW GREAT IT IS WHEN YOU DONT ANYMORE AND YOU GET EVERYTHING YOU WANT?

she gets to feel human again. thats so fantastic for you. do you know what that makes me?

this would not be a big deal in a memoir about one womans decade(?i think) long struggle to get better and happy ending. neither would the glaring lack of real social justice & meaningful critique of a system aside from how it sucks for her specifically with a tiny bit of lip service for the rest of us with MASSIVE, GLARING BLINDSPOT OF PRIVILEGE unescapable in everything she fucking says and does. however. i would not have read that book. i picked up a book called Reimagining Chronic Illness. and i expected it to be about reimagining chronic illness. perhaps, starting from an empathetic touchstone of personal struggle.

0/5 all i wish is that i had trusted my fucking gut or that this book wouldve had the decency to show me what it was SEVEN FUCKING HOURS AGO. i can tell why an ableist society showered it with praise.

[whatareyoudoingwithamaserati]

LISTEN. LISTEN.

Imprinted by that antigen—as if via a kiss, Caleb said, drawing a picture of an antigen and antibody interlocked—the naïve immune cell becomes an enemy specific to it.

(Quote from The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke)

THE POTENTIAL. YOU SEE SOMEONE AND YOU KISS THEM AND YOU ARE THE WEAPON DESIGNED TO DESTROY THEM FROM THAT MOMENT ON. I AM GOIGN TO EXPLODE

My innate ability is to read things and find romantic contexts in them. Immune cells snd antigens have enemies to lovers potential.

[the-forest-library]

“And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”

― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

[whilereadingandwalking]

In The Invisible Kingdom: Reimagining Chronic Illness, Meghan O'Rourke examines the narratives we tell around chronic illness and how they impact treatment, invisibility, and dismissal for patients—particularly women—struggling with autoimmune diseases in particular. She tells too of the years she was dismissed, ignored, and neglected by the healthcare system.

As with all such books I’ve read about this issue, it was simultaneously heartbreaking/infuriating and affirming/healing to see the problems with our healthcare system broken down so well. O'Rourke touches on so much about cultural storytelling—from the conceptualization of our autoimmune system as an “army” to the counterproductive attempt of feminism to reclaim ‘hysteria’ as a result of repression—and about personal storytelling—how doctors/friends can’t seem to understand your struggle if you don’t have an accompanying diagnosis, how the sympathy drains away if there’s no end or resolution to your story.

She digs into the difficulty of accepting uncertainty, of adapting to the knowledge that she might never know what’s wrong, that it might never come to a satisfying end.

O'Rourke superbly breaks down the systemic failure of our healthcare system and its inequalities: because insurance rewards diagnosis and discharge over ongoing care, by paying doctors more for patient quantity and shorter visits, doctors are not only overworked but are discouraged from spending a lot of time with patients. This makes it near impossible to get diagnosis or appropriate care if you’re struggling with a chronic or undiagnosed condition, or combination of conditions.

Doctors who do insist on integrative care and more time often have to choose to not take insurance, thus becoming unaffordable to most patients let alone marginalized ones. It’s a warped and broken system that leaves people struggling with invisible or undiagnosed illnesses at a loss, constantly returning for more visits, begging to be believed or given time.

I can’t possibly cover everything in my review that O'Rourke manages to cover in her book. It’s an excellent book about these issues that surround autoimmune, invisible chronic illnesses and medical dismissal. But I’ll touch on one more thing: how unapologetic O'Rourke became about her struggle, and how special that was for me. O'Rourke refuses the narratives that people want to hear—that her illness put her through a hero’s journey.

“To become chronically ill is not only to have a disease that you have to manage,” she writes, “but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need. My own illness story has no destination.“

In this nonfiction tome, O'Rourke is searingly honest and excellently well-researched, and I’m happy and excited to add this one to my steadily growing chronic-illness-themed bookshelf.

Content warnings for suicidal ideation, medical dismissal, chronic illness, chronic pain.

[celinamarniss]

2022 Reading List

thank you @virusq and @jedimordsith for tagging me in a 2022 reading list meme! My reading list is a constantly changing and expanding thing; this is the current iteration, but I could give you a completely different list in 3 months.

I got halfway through Hangsaman by Shirley Jackson before the audiobook had to be returned. The queue is long so I'm probably going to order the physical book to finish it.

Same situation with my Redwall relisten—my hold expired and I'm waiting for the audiobook to become available again. Same for Never Have I Ever by Isabel Yap, but with a physical book (only one copy in the library system!).

I started Gingerbread because I love Helen Oyeyemi, but I'm not sure I'm in the mood to read it right now.

Am I in the mood to read Georgette Heyer? I adored The Talisman Ring, so I've pulled out Devil's Cub and I might give it a go next.

The current audiobook is Mary Roach's Gulp. On the audiobook hold queue: Invisible Kingdom: reimagining chronic illnesses by Meghan O'Rourke, A Desolation Called Peace by Arkady Martine, Finder by Suzanne Palmer, Six of Crows by Leigh Bardugo, Terciel and Elinor by Garth Nix, Rebecca by Daphne Du Marier, and The Moonstone by Wilkie Collins.

[pippabookz]

[PDF/ePub] The Invisible Kingdom: Reimagining Chronic Illness - Meghan O'Rourke

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A?landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases?A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O?Rourke delivers a revelatory investigation into this elusive category of ?invisible? illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.?Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O?Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that

[rubypomegranates]

“There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there?”

Meghan O'Rourke “The Invisible Kingdom: Reimagining Chronic Illness”

[studying-the-light-of-laurelin]

April 2022 Reading Recap

This month, I read a lot of really interesting books, and came across some really really cool articles I think everyone should read. The below summary of calls out some of the key articles, subscription posts, and books I particularly enjoyed reading throughout April. Hope you enjoy!

Articles

How Democracies Spy on Their Citizens (The New Yorker)

Police surveillance and facial recognition (Brookings Institute)

Why the Past 10 Years of American Life Have Been Uniquely Stupid  (The Atlantic)

Unmasking China’s State Hackers (Zero Day)

In defence of being weird and embarrassing in public (Dazed)

Ethical Consumption: How to Pollute the Planet and Exploit Labor Slightly Less (Bitches Get Riches)

In “Russian Doll,” Natasha Lyonne Barrels Into the Past (The New Yorker)

Black Women Embracing ‘Cottagecore’ Is an Act of Defiance (Medium)

I want you back: Getting my personal data from Amazon was weeks of confusion and tedium (The Intercept)

Subscription Reads

Violet Blue’s Cybersecurity Roundup and Pandemic Roundup (Weekly Patreon)

Sector035’s OSINT Weekly Roundup

Bellingcat’s Bi-Monthly Newsletter

Note: Violet’s roundups are actually free for anyone to see, but I highly recommend you join her Patreon for just $1!

Books

The Invisible Kingdom: Reimagining Chronic Illness

How to Be A Woman Online: Surviving Abuse and Harassment, and How to Fight Back (ARC)

Seven Games: A Human History

WALK: Slow Down, Wake Up, and Connect at 1-3 Miles Per Hour (ARC)

Privacy is Power: Reclaiming Democracy in the Digital Age

Bonus: New Music

I literally cannot stop listening to these two mashups! The Kingdom Dance mashup just scratches my brain and the Tinashe x Britney mashup just sounds so good!

Kingdom Dance x Eleanor Rigby x Test Drive ONE HOUR LOOP

Tinashe x Britney Spears - 3X (Mash-Up)

[gideonthefirst]

👀

hi sarah! check out The Invisible Kingdom: Reimagining Chronic Illness by Megan O'Rourke

[the-forest-library]

“This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.”

― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

[the-forest-library]

“Her book is a fascinating personal account of her years spent traveling to different medical specialists to discover what ails her. It is also a clarion call—because there is a “silent epidemic,” she writes, “of chronic illnesses that are often marginalized, contested, or even unrecognized.” Illnesses that are, in so many words, invisible not only to our family and friends, but also, at times, to the doctors we turn to for answers and care.”

The Invisible Kingdom: Reimagining Chronic Illness

By Meghan O’Rourke