Chronic diseases perplex doctors, while leaving patients mysteriously ill

Meghan O’Rourke, the author of the best-selling book Invisible Kingdom, recently released an excerpt from this compelling story to Elle Magazine.

Meghan reveals how difficult it was to relate to the story of her illness.

She begins by explaining that she began to notice strange sensations in her twenties and thirties. She had night sweats, vertigo, and hives.

Her doctors were reassuring and told Meghan that her lab tests were fairly normal although she was slightly anemic. However, they reminded her that every patient has a few abnormal issues. Meghan agreed that she had a heavy work schedule and she did feel the pressure.

At age thirty-five things took a turn for the worst after Meghan returned from a trip to Vietnam. She had developed a severe rash on her arm. However she explains that for years she accepted the fact that she was really sick and needed solid medical advice.

Meghan finally realized that she had actually been unwell since 1997. She could no longer ignore her symptoms such as severe fatigue and brain fog.

When Meghan began searching for answers, she was received with skepticism but also with sincere concern from friends, clinicians and colleagues. She attempted many therapies, but her illness worsened.

Meghan realized that even though there remains much to be learned about cancer and heart disease, they are at least well defined and considered “real”. She lists many disorders in the “silent epidemic” that have been contested and unrecognized such as autoimmune disease, myalgic encephalomyelitis/

chronic fatigue syndrome and Lyme disease syndrome just to name a few.

Meghan also believes that long COVID will soon join the list of “mysterious” illnesses.

In 2012 Meghan became seriously ill. Her illness seemed to fit the category of a disease caused by mental illness. At that time a patient with a mysterious illness had to make every effort to legitimize their condition.

But ten years later, just about the time she had finished writing The Invisible Kingdom, everything looked different. Autoimmune diseases became the subject of clinical trials.

Subjects such as gut health and the microbiome became mainstream. COVID-19 had opened a window to the way human response to an infection can unleash aftereffects often activated by our immune system.

Yet Meghan points out that so many people such as herself were still dismissed by their doctors. Their symptoms continue to invade their bodies and their lives are dramatically shortened, because their test results seem to be normal.

The Way It Was

Meghan notes that years ago doctors considered

• Multiple sclerosis to be caused by hysteria
• Tuberculosis was considered to be a disease of romantic young people. That is until scientists found the bacterium causing it.
• Certain types of cancer were considered to be caused by repressed emotions

Today, we like to believe that we are rational about disease and immune to this kind of metaphorical thinking. But research shows that these views are still endemic in medicine, particularly when it comes to poorly understood illnesses, which are often seen as symptoms of a psychological problem. While advances in our understanding of mental illness constitute one of the great successes of 20th-century medicine, patients with immune-mediated illnesses confront an often reflexive categorization of their physical symptoms as mental ones—which presents a barrier to proper care and research. If medicine can’t see or name the problem, it can neither study nor treat it. It took years before Meghan realized the illness was not just her own; the silence around suffering was our society’s pathology.

Eventually she was diagnosed with late-stage Lyme disease and hypermobile Ehlers-Danlos syndrome, one of a group of inherited connective tissue disorders that can cause pain, fatigue, and dysfunction within the autonomic nervous system.

Meghan explains that she is not “better” but having found the doctors who knew what to look for, and having undergone antibiotic treatment for Lyme disease, Meghan says that she has returned to the person she once was.

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Rose Duesterwald Sept. 24, 2026