The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

“naturopaths” who have attended a four-year accredited graduate degree program, which follows some of the traditional medical curriculum and then branches off to teach holistic and whole-body approaches to health.

“integrative” and “functional” doctors: MDs who use Western medicine along with alternative practices. Usually, they aim to treat the patient as a whole person, seeking to unearth the complex root causes of an illness rather than offer a quick local fix. Integrative and functional medicine also aim to treat the body before it becomes pathologically ill, supporting it by instituting practices of self-care around nutrition, sleep, and stress, restoring the body to higher function, as it were.

I needed something else: I needed help getting through my day, and help figuring out why I felt better on some days than on others.

hyper-stimulated sympathetic nervous system—designed to help you evade predators and perform challenging mental tasks—and

parasympathetic system, which helps your body restore and repair.

As winter progressed and so did my illness, Jim and I fought. What he didn’t do, such as come to the doctors with me, took on oversized importance. What he did do (stick by me, believe me) was less obvious to me, or never enough. At times my anger about what was happening settled on him: I felt a profound sense of betrayal that he did not seem to feel the urgency of my suffering.

He seemed to credit my testimony fully, even to reflect that I was quite sick, in a way that few people did. But he didn’t seem to think he needed to help solve the mystery of what was afflicting me.

partners who did help often couldn’t feel the wave of need engulfing the ill person. And my god, the need. It felt shameful to need other people so much. I needed practical help,

it is hard to be the partner of someone ill, at once up close to the problem and permanently on the other side of the glass from it.

He wasn’t someone who would slow down, tune in, say, Are you OK? Do you need anything?

Your need, when you are sick, can squeeze up inside your chest, balling its way up and out of your throat. I pictured it as a thick, viscous, toxic gel that slid out of me at moments when nothing else could.

While I wrestled with the dawning reality that something was very wrong with me, he was not there to assure me (even falsely) that it was going to be OK, that he was on my side, that we would figure it out. These were the things I desperately wanted to hear, true or not. But I knew I could not ask for comfort at a moment when he was strained by his father’s grave illness.

When, I wondered, had I last yearned for something other than simply feeling better?

It wasn’t clear to me why I was weeping—the movie was not very good. But I realized, walking home, that the problems facing the protagonists were connected to life, whereas my problem was the small death of each day.

People whose illness has no name get little sympathy.

wasn’t it dire to slide slowly down into quicksand as those around you look away?

I’m not myself, I kept thinking. But then who am I? And who is this “I” who knows that “I” am not “myself”?

In my illness I was moored in an unreachable northern realm, exiled to an invisible kingdom, and it made me angry. I wanted to rejoin the throngs.

The heat had become a dimension of its own. I was drowning in its obscene strength.

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.

How could I get better if no one thought I was sick?

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.

the pain you feel when the possibility of communication disappears simply because of your identity. The loneliness is profound.

his formulation of negative capability seemed to be a key to living well in the face of pain.

I still feel the waves of grief that rose over me when I accepted that I had a chronic illness—that my life was permanently changed.

none of us would choose to suffer. But when we do suffer, we can hope that others acknowledge with us that we live without all the answers.

I can remember with a vividness that makes me shiver how unclear the illness was to me, how difficult it was to get hold of its contours, and the way the world seemed a kind of mist-filled plateau

I now knew, without a doubt, that there was such a thing as selfhood, because I had lost it.

my illness was forcing me to reckon with my identity—it

autoimmune diseases often led patients to confront the consequences of their own personal choices.

If you have cancer, you can fight your cancer. But if you have an autoimmune disease, what are you fighting against? Do you fight against your own immune system? Are ‘you’ your immune system? Are you the organ under attack? Who are you?”

to become autoimmune is to be seen as being personally divided, and having to heal not just your body but your mind.

Autoimmunity invites patients to psychologize their own symptoms like almost no other contemporary pathology does, because the fact of the immune system attacking the very body it is designed to protect seems itself metaphorical.

that illness causes a sense of apprehension that, before it is recognized as disease, seems psychological, setting the stage for some identification of the mind and body.

“I could feel an uneasiness deep in my bones.” Unease, dis-ease: Which is which, and does one’s unease (or dis-ease) come before the disease or follow upon the pathological processes?

I couldn’t tell whether my “self” was attacking “myself” without “my” knowledge or influence. Was it true that every time I got stressed about my work or had a fight with Jim “I” was making “myself” sick? Who was “I” and who was “myself,” and which had intention, and which didn’t? Did intention matter? I was tired, and confused.

“pushed myself too hard” and experienced “too much stress,” taxing my adrenals and leading to a compromised immune system.

there was common sense in the message. Sleeping well, relaxing, eating whole foods—I could see how years of stress, poor sleep, and erratic diet could mean that eventually even a healthy body would start to show signs of exhaustion.

Whatever role stress might play in my illness, I strongly suspected it had not caused it. And yet I, too, wanted to imagine that there was a magical solution: that behavioral modifications would lead—voilà—to physical and spiritual wholeness of a sort I’d never experienced before.

Many of us have felt the need to take a break from the chaos of our daily lives for our health’s sake. The world becomes more stressful by the day: constant inputs, tedious bureaucratic tasks or requests, emails, text messages. Indeed, a desire for less stimulation has been afflicting Americans at least since the invention of the steam engine.

not only do emotional demands on the body cause stress, but also that, if the stress is ongoing, it can contribute to hormonal dysregulation and a variety of other problems, from allergic reactions to ulcers and high blood pressure and kidney disease. The stress response is an adaptive function to help us survive periodic danger, flooding our body with the extra oxygen to help us flee the proverbial lion.

our bodies were not designed to feel stress routinely, as we do dealing with any assortment of pressures that modern life has brought with it. When stress becomes constant, Selye showed, it stops helping us and starts hurting us.

Chronic stress releases continual jolts of stress hormones, which can raise blood pressure and cause cardiovascular disease, leading to a hardening of the arteries. It makes gut-related illnesses like irritable bowel syndrome worse. And it can lead to dysfunction in cortisol production.

the human body responds to anticipated and imagined stress as if it is lived stress.

Our subconscious takes our conscious fears seriously, and adjusts our biology accordingly.

being sick makes you stressed. But being stressed makes you sicker.”

I knew that unpredictability and lack of control make people more stressed:

sick and without any control. I had no name for what was wrong with me, no possibility of treatment, and no sense of why my symptoms were happening when they did.

Americans still believe that positive thinking has a role to play in health. I, too, wished that it could lift me from my morass of sickness, even as I instinctively distrusted our cultural embrace of it:

American affection for positive thinking reflects a desire for illness stories to have neat resolutions and uplifting moral outcomes.