Are you looking for ways to improve your physical health? Perhaps you have been struggling for a long time with an undiagnosed malady or a disease that needs to be managed, or have a loved one who does.
Editor and writer Meghan O’Rourke’s latest book tells us how to understand and cope with chronic illness, which more of us are facing as we deal with the long-term impacts of COVID-19 that are only now being confronted and understood.
A ‘silent epidemic’
O’Rourke was at her wits’ end. She had been suffering from symptoms that were seemingly mild – a strange rash, unexplained fatigue, dizziness, daily hives. Starting gradually after college, they became more intense until they prevented her from functioning and feeling as well as she had before.
She went to many doctors who could not explain her symptoms and could not find anything wrong with her. She felt “trapped in a body that wasn’t working” and met with “cutting skepticism” from friends, colleagues, even doctors who didn’t believe she was ill.
But as she felt worse over time, she pushed for answers from physicians, healers, and researchers, until she was diagnosed with a form of autoimmune disease. Over the years, she suffered others, while bearing almost daily pain, nerve shocks, and brain fog, among other symptoms.
Such illnesses are often unseen and undiagnosed; sufferers might brush them off as inconsequential, a part of aging, or something to power through. O’Rourke calls these “invisible” and “marginalized” illnesses, and they cover autoimmune diseases, post-treatment Lyme disease syndrome, and long COVID.
Autoimmune diseases haven’t been much on the radar of Filipinos, but are now more in the public eye after Kris Aquino revealed that she is suffering from one. Her drastic weight loss and other symptoms concerned her fans. Whatever she is suffering from seems to not have been well understood here and she had to travel abroad for more tests and treatments.
Aquino uses social media to update fans about her condition and treatments. O’Rourke wrote a book, interspersing narrations of her own experiences with medical information, interviews with doctors, patients, and researchers, and references to illness in literature. She read works on illness by writers such as Virginia Woolf and Susan Sontag as she sought to find ways to cope with chronic pain and fatigue.
Writing to understand
Both Aquino and O’Rourke are using the power of the written word to analyze and navigate their feelings and experiences and document their journeys. “My own illness’s meaning… derives also from all the ways it was not allowed to mean until I wrote this account of its meanings,” O’Rourke writes. This is why her book is valuable – it helps others find the words to articulate and validate their own experience of chronic illnesses, and discover ways to help themselves or their loved ones to heal.
“What does it mean for a chronically ill patient to heal?” O’Rourke asks. “In some cases, it may mean a remission of disease. But in others, it means the patient is now able to manage the illness with some degree of integrity.” Her journey toward getting a proper diagnosis and reaching a point of management took decades. Along the way, she learned some factors that are scientifically proven to contribute to healing, among them an environment close to nature, fresh, dry, air, and sunshine.
O’Rourke points out that we need to think of health as something that is “beyond the mere curing of disease.” She quotes the World Health Organization’s definition of health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” We need to engage with this definition, she says, if we want to do better and feel better, particularly when it comes to chronic illness.
Written with candor, courage, and erudition, The Invisible Kingdom brings awareness and knowledge of chronic illness, what it feels like, and how to cope with and manage it.
It’s a clear and sympathetic resource for sufferers and their loved ones, and an eye-opening read for those who want to learn more about this timely topic. As O’Rourke writes, referencing John Donne: ‘Being ill is a social experience…[it is] impossible to understand without thinking of the self in relation to others.”
For comments and feedback, you may reach the author on Facebook and Twitter: @DrJennyO
The Invisible Kingdom: Reimagining Chronic Illness
By Meghan O’Rourke
2022, 324 pgs., tpb, Riverhead Books