By David Tuller, DrPH
*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/31347
Last Friday, I interviewed poet, journalist and editor Meghan O’Rourke about The Invisible Kingdom, her insightful and affecting memoir of living with chronic illness. As the book recounts, O’Rourke initially began experiencing perplexing physical signs and sensations not long after graduating from Yale in the late 1990s–“daily hives, dizziness, chronic pain, and drenching night sweats.” She struggled for years with a range of debilitating symptoms, and finally found some relief after being treated for chronic Lyme disease—itself a controversial diagnosis. In 2013, she wrote an extended piece about the issue for The New Yorker.
The Invisible Kingdom was published to widespread praise last month–a timely moment, given our current global epidemic of post-viral illness, popularly known as long Covid but more formally called post-acute sequelae of SARS-CoV-2. The book quickly hit the New York Times bestseller list and has already generated greater awareness of some of the complex chronic conditions that lack widely accepted diagnostic tests. It is also filled with gorgeous and haunting sentences, like this one: “In the dark room where I listened to life happen around me when I as sick, I yielded a part of myself forever.”
In our conversation, we talked about O’Rourke’s own journey through this “invisible kingdom,” the challenges of finding appropriate medical care, the loneliness of being sick, the ravages of brain fog, the emergence of long Covid, and the struggle to find words to describe experiences and states of being that defy easy description.
If Lyme disease is an example of another ‘controversial diagnosis’, then it seems to me almost the polar opposite of ME/CFS in terms of how doctors view it politically. While the “CFS” label especially has been used as a dumping ground for all sorts of fatiguing diseases, conditions and illnesses, Lyme Disease appears to be the diagnosis that no doctor is allowed to give because it’s considered so rare (as I understand it, it’s not that rare) and so impossible to diagnose correctly (no cast iron test perhaps, but that doesn’t stop them labelling people with CFS and prescribing potentially harmful treatments) that it’s probably better to ignore the possibility altogether and pass the patient off as neurotic or catastrophizing for even suggesting it. How did medicine become so debased that cliched ideas about patients and illnesses now appear to take precedence over thorough investigation, evaluation and a quest for the truth?
I saw many testimonies myself. Quickly, I copied his email, I emailed him, he requested for some information for delivery, then i purchased the herbal medicine And he sent it to me, i received it after some few days, then i took as prescribed then with little faith, after taking it for 2 weeks and some days. i went for check up, I was tested HSV negative. I promise to tell the world about him. You can contact via email Robi nsonb uckler @ Yaho O. com !!.
………….
I am so happy,..it wooooorks…