The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

I grew frustrated that so many people wanted to assume that my pain was emotional in origin without knowing anything about my medical history.

Outside, my friends were meeting in the park, eating picnic lunches in sweaters as their children poked one another with sticks, or hailing taxis in a sudden downpour, giving the stranger at a party a second, hungry look. Inside, it was dark and stuffy, and I labored to survive an illness no one could see. In this way the undiagnosed suffer, doubly alone.

Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing (the word “diagnosis” derives from the Greek gignōskein, “to know”) that allows others to recognize our experience and enables us to tell its story. I felt acutely the absence of a story I could tell others. Without a story, who—or what—would help me get better?

The 21st Century Cures Act—which went into full effect in April 2021—mandated that patients have the right to access their records and doctors’ notes electronically, and usually all one has to do is sign up for a MyChart account to get those notes.

But the system as a whole remains ill-equipped to deal with chronic illness.

(though male doctors often felt a need to comment patronizingly on her weight to me, as if I would share their sentiments).

Even as a white cisgender woman, I faced indifference and incuriosity.

physicians often assume patients who “doctor shop” are problem patients. I also quickly learned one of the worst things I could do was to show up prepared with prior medical records.

Contemporary medicine prides itself on patient-centered care, but it is startlingly inattentive—even actively indifferent—to patients’ emotional needs. For patients with chronic illness, with its upheaval of life, this indifference poses a particular challenge. In chronic illness, the patient does not have a problem that can be solved quickly but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t like to manage; they like to fix. Medical education emphasizes solutions and is often “equated with cure,” according to a 2005 study of doctor-patient relationships in chronic illness. Unfortunately, “the treatment of chronic disease conflicts so fundamentally with these expectations that it tends to be neglected.” Indeed, a 2004 Johns Hopkins study found that nearly two thirds of doctors surveyed felt inadequately trained in key aspects of care of the chronically ill.

For example, the incidence of severe diabetes complications in patients of doctors who rate high on a standard empathy scale is a remarkable 40 percent lower than in patients whose doctors do poorly on the empathy scale, Danielle Ofri, an internist at New York’s Bellevue Hospital, reports in What Doctors Feel.

“the idea that the opportunity for patients to feel heard and cared for can improve their health.”

This is why the doctors who took the time to acknowledge that they could see I was sick for reasons they didn’t understand made a powerful impact on me, far beyond what they imagined, I am sure. Their words were like a rope thrown across a frightening abyss.

Truth

instructed Harvard medical students, “The secret of the care of the patient is in caring for the patient.”

“What the language of alternative medicine understands is that when we feel bad we want something unambiguously good,”

It felt shameful to need other people so much.

“In fact, all our dishes are gluten-free!”

As someone gluten intolerant this sounds like an amazing restaurant

One of the punitive fantasies—to borrow Susan Sontag’s phrasing—society has long held about women who are ill is that their unwellness is mainly in their heads.

The stereotype of the sickly woman whose disease is strictly psychological still holds today, when examples in medical literature of “problem patients” are nearly always women. And so it is a truth universally acknowledged among the chronically ill that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.

More than 45 percent of autoimmune disease patients, a survey by the Autoimmune Association found, “have been labeled hypochondriacs in the earliest stages of their illness.” Of the nearly one hundred women I interviewed, all of whom were eventually diagnosed with an autoimmune disease or another concrete illness, more than 90 percent had been encouraged to seek tr...

Around the time I got sick, my grandmother and my father told me at a family gathering how much my great-aunt, who died in the early 2000s, had enjoyed being ill herself. She was a frail, thin artist with a big smile who was often in bed when I visited her. I remember liking her very much, and I remember, too, that she had a habit of talking about her symptoms, musing about what was happening in her body. In the decade since her death, several of my aunts were diagnosed with autoimmune disorders, and it seems plausible that my great-aunt had had a genuine illness. But some in our family believed that she simply craved attention.

I highly doubt she enjoyed being sick

Estimates suggest that as many as one in four women will develop an autoimmune disease;

In the middle of the night, when I woke in the dark with my heart pounding, what really terrified me was the conviction that my doctors did not believe me, and so I would never have partners in my search for answers—and treatments. How could I get better if no one thought I was sick?

A 2011 study found that male mice were overwhelmingly used in four fifths of the fields studied. Researchers do not include female mice in their studies, The New York Times noted, because of concern that “the hormonal cycles of female animals would add variability and skew study results.”

As a consequence, some drugs that receive FDA approval are later discovered to be unusually harmful for women or to require different dosages than the one that was approved. One such drug is Ambien, which is metabolized so much more slowly by women than by men that women were getting into car accidents the morning after taking it. In 2013, the FDA required the manufacturer to reduce the approved dose for women by a remarkable 50 percent.

But medicine has not simply neglected to research women’s health; it has also failed to treat women who are sick. One study found that women in various ERs were 13 to 25 percent less likely to receive opioid painkillers (the strongest painkiller medicine has) than men were.

2014 study in Sweden found that women wait an average of fifteen minutes longer to be seen in emergency rooms than men do.

The central issue is that physicians tend not to see women’s self-reports of illness symptoms as valid. When a female patient complains of pain or discomfort, her testimony is viewed as a gendered expression of a subjective emotional issue rather than a reflection of a “hard” objective physiological reality. Even when it comes to a disease as grave as cancer, a woman’s testimony about what she is experiencing is seen as an exaggeration. You can guess what happens, then, when doctors cannot identify the source of the symptoms.

One young woman I interviewed told me, “I wish doctors had just looked me in the eye and said, ‘I don’t know what’s wrong with you. But I believe you. And one day we’ll figure it out.’ I would have had so much more confidence in that person. To have the arrogance to believe we know everything about everything! The number of physicians who said, ‘There’s nothing wrong with you. You’re just depressed’—well, it was so demeaning.”

Agreed

The statistics of undertreatment and misdiagnosis are even more stark when it comes to treatment of women of color. Studies routinely show that Black and Latinx patients are undertreated for symptoms compared with white patients.

“Unfortunately, anxiety is high up on their list of considerations. They check one or two things and if they don’t find anything, it’s anxiety. But it would be better for a doctor to say, ‘I don’t know what this is,’ because as the patient, you’re trained to trust medical authority. If they say, ‘It’s anxiety,’ part of you will think that it is anxiety.”

The ancient Egyptians and Greeks—as my father, an Egyptologist and classicist, taught me—laid the blame for various medical conditions on women’s wombs (“hystera,” in Greek).

Hippocratic medicine believed the womb could “wander” and cause disease, including a condition known as “hysterical suffocation.”

the thymus, a soft, pinkish-gray triangular gland above our heart. (It resembles a thyme leaf, hence its name.)

Interesting

why do women make up approximately 80 percent of people with autoimmune diseases? An answer may lie in the replicated X chromosome (which allows for a genetic mutation to happen twice) or in the role estrogen plays in regulating the immune system. Women generally have a stronger immune response to infections and vaccines than men do. (Consider the fact that men are more likely to die from COVID than women.) Studies suggest that estrogen interacts with the adaptive immune system’s B and T cells in ways that predispose it to become more “autoreactive.” One review of the literature on autoimmunity noted that “many autoimmune disorders tend to affect women during periods of extensive stress, such as pregnancy, or during a great hormonal change.”

A doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits.

Ugh

Our word “pain” is from the Latin poena, or “penalty,” later the Old French peine, or “suffering,” as punishment.

“This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.”

100%

I knew that unpredictability and lack of control make people more stressed: studies show that people in pain who can control their own pain medication use much less of it than when nurses control the meds.

True

Since then, most studies have suggested that positive thinking does not lead to better outcomes with breast cancer.

not surprised

on Cape Cod, which, I knew, had some of the highest rates of Lyme disease in the country.

Did not know this

It is hard to describe without using the usual words: I had a headache, achiness, flu-like symptoms. But it’s one thing to have these symptoms for a day, or even a week. Suffered daily, they take on a meaning beyond the pain, like being shadowed by a specter. You have a feeling something in your body is trying to defeat you, that something inside you wants you dead.

So relatable

If only I could figure out the difference between the good days and the bad days, as Ellen Langer suggested, perhaps I could reverse the disease, or improve.

So true

One chilly night, I drove a few colleagues from Princeton back to Brooklyn after a department holiday party. I looked over at the man sitting next to me—a novelist I’d known for years—and realized I had no idea who he was. I knew I knew him, but who was he? It took an hour to recover the information that he was a friend and a colleague.

Relatable

“POTS,” or “postural orthostatic tachycardia syndrome,” which many of his patients suffered from. POTS is a subtype of dysautonomia. (“Dysautonomia,” as mentioned earlier, is itself an umbrella term for a host of different conditions, many of whose causes have yet to be fully pinned down.) In common manifestations of POTS, a patient’s autonomic nervous system has trouble regulating the heart’s response to exertion, changes in posture, or variations in temperature, sending the body into an inappropriate fight-or-flight response. Some patients’ systems have trouble adjusting blood pressure or constricting blood vessels to send blood to the brain. Blood can pool in the legs and peripheries of the body. The heart might compensate by increasing its rate, while the body releases surges of adrenaline in a fruitless attempt to correct the problem. As a result, patients can experience some blend of fatigue, headaches, digestive problems, heart palpitations, and cognitive issues such as brain fog. (POTS has become better known of late because COVID-19 appears to trigger it, or a condition closely resembling it, in a significant number of patients.)

I have pots

In this sense, the researchers working on Lyme disease are at the forefront, too, of fresh insights into how an infection—or the debilitating consequences of successive infections—can activate chronic inflammatory diseases, sometimes destabilizing the nervous system and triggering dysautonomia.

how much they liked spending rainy days in their “jim-jams” (British for pajamas).

now I know the British term for pajamas

(Ninety percent of serotonin is made in the gut.)

Wow

I had something known as “antiphospholipid antibodies,” which the rheumatologist Michael D. Lockshin had identified as a threat to some pregnancies. I also had other autoimmune markers that could perhaps lead to immunological complications in pregnancy. My doctor put me on steroids

My mom had this and was on steroids when pregnant with me

For me and others who have been seriously ill, the idea that we could confuse these symptoms with the normal aches and pains of life is laughable.

True

A 1984 study, published in Science, found that when hospital rooms have windows with a view of something natural, patients heal more rapidly than they do without one: the environmental psychologist Roger Ulrich examined hospital records of forty-six patients who had gallbladder surgery between 1972 and 1981, and who had had different views out their window. One group had windows overlooking a grove of trees. The other group looked out at a brick wall. The patients overlooking the trees left the hospital almost a full day earlier than the other patients, and needed less pain medication.

Interesting