What It’s Like When You Know You’re Sick but Doctors Can’t Tell You Why

A conversation with the poet and author Meghan O’Rourke about her struggle with chronic illness—and the “silent epidemic” of chronic disease nationwide.

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Illustration by Michael Houtz; Photographs by Getty Images

Nothing was quite so unnerving for Meghan O’Rourke than never being able to fully explain why she didn’t feel well. Throughout her 20s, she was afflicted by a variety of symptoms: stabbing sensations up and down her arms and legs, brain fog and memory problems, night sweats, gastrointestinal issues. Around 2012, when O’Rourke was in her early 30s, she grew even sicker—but her doctors, unable to find anything distinct, attributed her physical health to stress and anxiety.

“There was this strange period of trying to articulate that I’m not myself, but I can’t tell you why or what it is that is wrong,” she says. “After about 15 years of going to doctors I started to have the conviction that something, in fact, was wrong, even though no one could recognize it.

O’Rourke recounts the history, mystery, and unraveling of her unusual health in The Invisible Kingdom: Reimagining Chronic Illness, out this week. After decades of seeking, the poet, author, and Guggenheim Fellow finally has a grasp on the cause of her own persistent sickness.  (See link for article)



And, you guessed it, Megan has chronic Lyme disease.  You start to identify these cases 20 feet away by the litany of common migrating symptoms, and the inevitable gas-lighting from doctors who are too lazy and indoctrinated to figure it out.

Due to the neglect from health professionals for over 20 years, Megan, like so many others, spiraled down a dark vortex with innumerable conditions that will only worsen with time. She has EDS, POTS, and Hashimoto’s – all of which are quite common with Lyme/MSIDS patients.

Key quote:

“The kinds of illnesses I’m writing about in my book are called invisible illnesses because they are hard to measure, and we live in a medical system that likes measurement,” says O’Rourke.

Truer words were never spoken.

And, because Lyme/MSIDS can’t be “measured,” patients are simply written off.

Perhaps I’m “triggered” by the word “privileged,” but the author specifically uses that power-punched, emotionally laced word to describe her position in that she had the ability to advocate for her own care while others do not.

I would argue that to get through this gauntlet you will be REQUIRED to advocate for yourself.  But, just remember, you aren’t alone. While you will have to do the heavy lifting (the torturous treatment that makes you question the importance of living) you are never alone and you don’t have to reinvent the wheel.

Lyme/MSIDS patients are some of the most selfless and knowledgable folk I’ve met, and I’m indebted to the myriad of patients that have all helped me through the years.  This is why I do what I do.  I realized a long time ago that the best help comes from other sick patients and I needed to be a part of that band. 

These sick people will listen, commiserate as no one else can, point you in critical directions, give you all sorts of intel about educated doctors, treatment modalities, where to find the cheapest drugs, other conditions to consider (mold, MCAS, pain management, sleep help, how the detox….etc.) and perhaps most important of all, they will give you hope to keep shuffling.  Having trod the pot-holed riddled road themselves, they understand the importance of persistence, as that ONE or two things that really propel you forward may take a while to discover.  This is a journey – often a long one (life-long, even) and attitude is key.  There are ups and downs, days you won’t or can’t get out of bed, and many days you spend calculating how to pay for treatment and still be able to eat.  Add children and family (even infected ones) into this mix and you have bedlam of a magnitude that’s off the Richter scale and frightening as hell.

It’s a miracle we get through it at all.  But, we do.  And you will too.  Chin up and forge forward, and don’t be afraid to ask for help. 

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