Nursing Book Club

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke

The personal and social impact of unexplained and chronic conditions

Author Meghan O'Rourke headshot next to cover of The Invisible Kingdom

It can be difficult to separate our physical condition from our psychological or emotional state. Symptoms like fatigue, headache, and digestive upset can indicate anything from viral infection to too much stress and too little sleep, and after a while, we can easily lose track of how long the symptoms have been going on.

That’s why author Meghan O’Rourke can’t say for certain when her chronic illness began, although she offers several possibilities. Her illness might have begun after her college graduation and all the life changes that entailed, or in the wake of a viral infection she suffered after her mother died. Her health may also have taken a turn after she developed a rash on a beach vacation several years later.

Whenever it began, she suffered for years from symptoms of a mysterious illness for which no doctor was able to offer a diagnosis or any treatment that really helped. She became desperate in her search for a practitioner who could help her, going far afield of mainstream medicine in search of answers.

O’Rourke’s illness was ultimately diagnosed as Hashimoto’s thyroiditis and chronic Lyme disease. Lyme disease is a bacterial infection caused by a spirochete transferred from a tick bite to the victim’s bloodstream. Caught early, it can be cured with antibiotics, but in later stages, it can cause debilitating and long-lasting illness that doctors admit they still don’t fully understand.

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Hashimoto’s thyroiditis is a hereditary autoimmune disorder in which the body’s own immune system attacks the thyroid gland. It is more common in women, causing symptoms like fatigue and menstrual problems, which as we know are often not taken seriously.

A Malady with No Name

O’Rourke is a poet and an award-winning nonfiction writer. She’s been the youngest editor at The New Yorker and a feature writer for The New York Times Magazine. She’s an excellent writer and is well-positioned to help us understand the years of turmoil brought on by chronic illness.

She points out that chronically ill patients find it hard to get the empathy they need from others, especially without a diagnosis. When symptoms drag on for years without resolution, family and friends become worn out, the patient becomes depressed, and careers and relationships suffer. O’Rourke’s illness also profoundly changed her self-image.

While the author’s illness was eventually diagnosed, there are a host of other chronic conditions that remain poorly understood. This leaves patients without the information needed to chart their way back to health or even effectively manage their symptoms. Many patients end up grasping wildly at ineffective treatments, as O’Rourke did.

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A Growing Problem in the U.S.

Unfortunately, this problem may only get worse. Lyme disease is increasing with climate change — shorter and warmer winters result in an increase in the tick population. COVID-19 is also emerging as a chronic condition. In June 2022, the CDC and Census Bureau reported that one in five people who survive COVID-19 still have some symptoms at least one month later, and in some cases, the effects of “long COVID” can persist for much longer.

All this has enormous implications for U.S. healthcare in general, and points to the possibility that chronic illness, inadequate medical knowledge, and insufficient healthcare resources will touch a lot more lives in the future.

O’Rourke argues that there should be a center for autoimmune disease that allows medical providers of different specialties to meet and discuss cases, rather than putting the burden on the patient to carry their charts from physician to physician, some in different cities, hoping the next appointment will bring answers.

Above all, she says patients who suffer these kinds of “invisible” conditions deserve to be taken seriously rather than dismissed as malingering attention-seekers, which means reassessing the way we as a society think about disease and chronic illness.

The Invisible Kingdom is not a light read, but it’s interesting for anyone curious about the personal and social impact of chronic conditions and the complex relationship between health and environmental triggers.

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke (Penguin Random House, 2022)

CHRISTINE CONTILLO, RN, BSN, PHN, is a public health nurse with more than 40 years of experience, ranging from infants to geriatrics. She enjoys volunteering for medical missions.

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