The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

This does not mean that the illness is in the mind; rather, the mind—that machine for making meaning—makes endless meanings of its new state, which...

There is a loneliness to illness, a child’s desire to be pitied and seen.

How can you explain and identify your condition if no one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that’s not always there?

The hardest thing to convey to doctors or friends was the debilitating fatigue, which many other patients I knew experienced as well. Complainin...

It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog; it wasn’t just the loss of self that sociologists talk about in connection with chronic illness, in which everything you know about yourself disappears and you have to build a different life. Rather, as I got sicker that winter, I no longer had the sense that I was a distinct person. On most days, I felt like a mechanism that moved arduously through the world simply trying to complete its tasks.

absorption in a task—an immersive flow—can lead you to forget that you feel pain, but my fatigue made such a state impossible.

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself.

When you’re sick, the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. “Farewell me, cherished me, now so hazy, so indistinct,” Daudet writes—a line I now often thought of.

My mental sensation of no longer being a person had a correlating physical symptom: my eyes no longer seemed like lenses onto the world. They seemed, rather, to be distinct parts of my body, as perceptible as fingers—oddly distant, protuberant, like old-fashioned spectacles. My face was a mask I was conscious of at all times. It made me feel categorically fraudulent. I could feel the fat in my cheeks and the weight of my bones as I spoke. I experienced a mounting anxiety: everything w...

“English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. . . . The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to des...

“To have pain is to have certainty; to hear about pain is to have doubt.” The same was true of all my symptoms, none of which could be seen.

pain was only one of my symptoms, and not even the worst. But its constancy was wearing. It moved around my body, changing from day to day, worse one day in my hips, the next my neck or my right thumb. My muscles were always tight; shooting pains ran from my shoulder to my neck, or down my legs.

Some days, the pain tipped from manageable to consuming, as if my brain had been caught in an unexpected electrical storm. When it did, it was as if a high-pitched noise no one else could hear was in the room. It distracted me and made me irritable. I was both present with others and off in my head, attending to the pain, trying to gauge its neural contours.

rank my pain level on a scale of 1 to 10 week after week, an exercise I found impossible: How to describe intermittent severe pain on the same scale as constant middle-range pain, which I found more debilitating?

Attempting to reduce pain that was context dependent to a number just made it clear that there was no way to make this invisible symptom legible to others.

the metaphors for pain to be limited. “Burning,” “tingling,” “stabbing”—these words did little to describe pain’s reality, which ebbed and flowed according to its own logic. Pain was an empire of its o...

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

(It had worked for them; therefore it must work for you—a mindset one encounters a lot.)

All I knew was that day after day the pain moved around. I did my best to ignore it.

At times I thought I would slowly slip away unseen and no one would notice because the shell of my body was still there.

“Whenever you offer an account of yourself to others, you labor to present yourself as coherent and worthy of recognition and attention,

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?

I could imagine what it was like to give up, to feel your mind go as wobbly as your body, reconciling yourself to the idea that death would really be a relief—a respite from lonely suffering. I could sense, inside my body, the muddled pains of hers.

some mental strife was the source of my disease—a dis-ease, in other words? This was why I wanted others to see what was happening to me, to know that I was locked away in the room alone. If they knew, perhaps someone could find a way to get me out. Instead, I feared, I would be relegated to a world of the imaginary ill, exiled to an invisible kingdom from which I would never be allowed passage.

Yet I felt deeply that something was wrong.

a cell-deep conviction: that whatever was wrong was not in my head.

Counseling plays a crucial supportive role in the management of chronic illness, which can bring depression with it, either as a consequence of living with illness or, indeed, as a feature of the illness itself:

inflammatory and autoimmune diseases can affect the brain, causing neuropsychiatric disease along with other symptoms. The trouble was that in the face of uncertainty, this doctor viewed my problems as exclusively psychological.

each time I saw a doctor who suggested I see a different specialist, I had to resign myself to waiting four to six weeks.

I often waited for an hour or more to be seen for ten minutes. (Or fifteen, when my doctor had time.)

The bigger problem, though, is that all these hoops made it much more likely that I would just give up or fail to follow through. At times I did.

the system as a whole remains ill-equipped to deal with chronic illness. It’s technologically proficient but emotionally deficient, much better at treating acute problems than chronic ones:

Doctors at times seemed brusque and even hostile toward us. The lighting was harsh, the food terrible, the rooms loud and devoid of comfort. Weren’t people there to heal? This did not appear to matter. What mattered was the whole bureaucratic apparatus of “care”: the beeping monitors and hourly check-ins and forced wakings, the elaborate (and frequently futile) interventions painstakingly performed on the terminally ill.

those who cannot afford (financially or energetically) to keep searching sometimes stop, stuck in the trap of unidentified illness.

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

A patient goes to the doctor to explain that something seems very wrong. When tests turn nothing up, the patient is told she is fine, and emerges without answers, questioning everything she thought she knew about her body and her perceptions.

How can well-intentioned doctors listen openly to the woes of chronically ill patients when they themselves are frustrated and burned out?

I steeled myself before appointments, yet I never managed to ask even half of my questions without feeling that I’d already imposed and exhausted the physician’s generosity.

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.

It is difficult to be a patient for long without coming up against the hard truth that what you are searching for and what your doctor is offering are two entirely different things.

One of the underacknowledged facts of being ill is how difficult and saddening the encounters with the medical system can be.

I want to be treated as a person, but I’m only a patient to them,”

when you are suffering day in and out, it feels terrible to go to the doctor’s office and barely be spoken to.”

patients want to be listened to, not least because they view doctors as authorities conferring further meaning and recognition, which doctors may not realize.

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.

chronically ill patients to want an emotionally supportive relationship with their doctors.

Alternative medicine appeals to many chronically ill people precisely because it offers what its name suggests: an alternative to a vast, bureaucratic, impersonal medical system that leaves little room for the personal side of sickness.

Alternative medicine is built around the twin rituals of offering soothing care and focused attention.