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You may feel lonely, but you are not alone. We invite you to learn more about Meghan's book, and to hear from others who are coping with chronic illnesses…We will update the stories here as we hear more from you...


LIFE IN THE INVISIBLE KINGDOM 

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I love hearing from readers, and I believe stories are key to making our lived experience visible to others. I invite you to reach out with your stories: meghan@meghanorourke.com. I won’t be able to answer each email, but I read all of them, and I will periodically share stories and insights from all of you–the people who are the Invisible Kingdom–here.

I also like to remind people that I’m a writer, not a doctor or scientist, so I am not able to give medical recommendations, but I hope that each of you finds the care you need. 

A NOTE FROM MEGHAN…

EVENTS


Wednesday, May 11 at 7pm ET
Hudson Valley Writers Center
Virtual event with Cathy Park Hong
Register here

Saturday, May 14 at 11.30am ET
PEN World Voices Festival
In person/virtual panel including Chloé Cooper Jones
Purchase ticket here

Wednesday, May 18 at 6pm ET
MGH Russell Museum of Medical History
Virtual event with Suzanne Koven, MD
Register here

Friday, May 20 at 11:15am ET
Autoimmune Warrior Summit
Virtual keynote and panel with Aila Health
Register here

THE INVISIBLE KINGDOM BOOK TOUR

May 20 at 11:15am ET
Autoimmune Warrior Summit

May 11 at 7pm ET
Hudson Valley Writers Center


May 18 at 6pm ET
MGH Russell Museum of Medical History

May 14 at 11.30am ET
PEN World Voices Festival • New York, NY

Virtual event with Cathy Park Hong
Register here

Virtual event with Suzanne Koven, MD
Register here

In person/virtual panel including Chloé Cooper Jones
Purchase ticket here

Virtual keynote and panel with Aila Helath
Register here

I invite you to share your story by tagging me on Twitter (@meghanor) and/or Instagram (@meghanor) with the hashtag #invisiblekingdom to help make invisible illnesses more visible. 

SHARE YOUR STORY.

“You don’t wear a sign; it's an invisible illness. I usually look normal. But sometimes I feel like hell and people say, 'Oh, really? You look fine.' And I think, 'They’re not believing me.' 

— Bobbie,  Mixed Connective Disease, Primary Biliary Cholangitis

“It's terrible to feel alone with this, there's that moment in the room with the doctor who's excited about seeing this freaky thing and explaining it to you where you feel so accompanied… And then you leave his office, and go home and start googling almost as a way to continue the connection. But ultimately you're only going to see him when you're sick, when you're having a flare, or whatever, and he's moved onto the next thing… But the pain–it’s terrible. And it brings on hopelessness, which is really debilitating also. Sort of like, it's going to be like this forever.”


— Ann

“I have a lot of harbored resentment for being sent away with prescription for anxiety medications, for not being taken seriously. At least ten doctors sent me away saying “You’re fine.” Not that they didn’t do some research, but they didn’t look deeper into the problem!” 

— Diana , Ankylosing Spondylitis, Polycystic Ovaries, Arteriovenous Malformation

“I’m amused when people ask me, “have you tried this or that,” because it’s such a given that I have tried it all already after twenty years. All I do is try to think about things I haven’t tried”

— Michael, Ehlers-Danlos syndrome

“The way that I have explained it is to tell people that OK, you realize that COVID can kill: there is a small percentage who die. There is also a huge percentage of people who get better. But you need to allow for the third possibility, that there is a third group, somewhere in between, who just do not get better. We do not die, thankfully. Yet we do not get better. And, unfortunately, this is the club you do not want to belong in. But this is where I am. That is what I want people to understand. There are a lot of us here.” 

— Nitza, Long COVID

Here are just a few recent stories and testimonials … We hope they inspire you as much as they have us.

FROM OUR COMMUNITY

"My biggest frustration was the time it took. The time between the first symptom and when I actually was diagnosed with what I now know what I have was a long time. Just not knowing, not having something to associate with what’s happening, was difficult."

— Jess, 
psoriatic arthritis

"So many of us feel absolutely alone for many years, we need more and louder voices to reach those still living in the dark." 

— Josh, Hypokalemic Periodic Paralysis, ATS

"I felt like I was reading an inner voice, the words someone else wrote for me that I couldn't. In a world that makes a sick person feel like an isolated and untrue flaw, your book helped me feel sane."

— Nyssa, Chronic Inflammatory Response Syndrome, Idiopathic Hypersomnia

EVENTS

LEARN MORE

An illuminating look at the elusive category of chronic illness and autoimmune disease, written by New York Times bestselling author Meghan O’Rourke and inspired by her own personal journey. 

— Andrew Solomon,
The New York Times Book Review

"An authentically original voice and, perhaps more startlingly, an authentically original perspective."

THE INVISIBLE
KINGDOM?

ARE YOU LIVING IN

New York Times Bestseller

Press

“An authentically original voice, and perhaps more startlingly, an authentically original perspective.” —The New York Times Book Review

“At once a rigorous work of scholarship and a radical act of empathy.” —Esquire

O'Rourke “gives shape and color to the invisible life of patients whom society has failed. She offers hope for patient-driven change. Most important, she provides an account that many will be able to relate to—a ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all.” —Wall Street Journal

“O’Rourke boldly investigates the origin of her ills and possible cures. More crucially, she probes the cultural, psychological, and medical experiences of people with poorly understood or immune-mediated illnesses... The Invisible Kingdom couldn't be more timely.” —The Boston Globe

“O’Rourke’s book has ignited a necessary conversation, proving the pen to be as mighty as the stethoscope.” —Oprah Daily

“O’Rourke uses her experience to illuminate the facets of American society that often remain invisible to the rest of us: the blind spots in our scientific and medical paradigms, the shortcomings of our individualistic ethos, the way economic inequalities show up in our bodies, our culture’s tendency to pathologize suffering.” —The New York Times' The Ezra Klein Show

“O’Rourke is a poet above all else, and it’s with incredible, lyrical empathy that she not only shares her own story of and eventual diagnosis with late-stage Lyme disease, but puts it in perspective of an entire generation of patients who’ve been dismissed… A must read.” —Lit Hub

“Meghan O’Rourke’s book is a searing and thoroughly researched exploration of the pain and confusion that many of them go through in their quest to have their health issues taken seriously by the medical establishment—and, often, the world at large.” —Vogue

“The Invisible Kingdom will resonate with anyone who has gotten sick and been told by doctors that their ailments are ‘all in their head.’” —Bitch Media

“O’Rourke’s book is a reminder that there are plenty of people like her who know they’re sick—and are still searching for the reason why.” —GQ

A “personal and deeply moving exploration of life with chronic illness.” —Library Journal, STARRED REVIEW

“An affecting portrayal of how we view disease, experience illness, and search for healing.” —Booklist, STARRED REVIEW

“Emotionally compelling and intellectually rich.” —Kirkus Reviews

“With a poet’s sensibility, journalist’s rigor, and patient’s personal investment, O’Rourke sheds light on the physical and mental toll of having a mysterious chronic illness…Readers will be left in awe.” —Publisher's Weekly, STARRED REVIEW

Named a New York Times Bestseller, Most Anticipated Book of 2022 by Vogue, Oprah Daily, Lithub and Kirkus and a Best Nonfiction Book of 2022 by Esquire

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