what i'm reading: the invisible kingdom: reimagining chronic illness

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke is a important book. I would even call it a landmark. 

For ten years, O'Rourke suffered from a debilitating condition that was either misdiagnosed or dismissed. Her search for answers forms the structure of this book. 

Although the author writes about her own experience, The Invisible Kingdom is not a typical illness memoir. It doesn't follow the familiar trajectory of illness-adjustment-recovery-lessons learned. O'Rourke uses her own story as a springboard to explore chronic illness from social, cultural, and political perspectives, intertwined with the personal story.

O'Rourke exposes how the American healthcare system, medical training, and culture conspire against chronically ill people, creating insurmountable obstacles and destroying lives. 

This book is a must-read for anyone struggling with chronic illness, but even more importantly, it's a must-read for health care practitioners. 

It's written in a US context -- a culture which worships individualism, where healthcare is not a universal human right, where both the amount and quality of care one receives is dependent on privilege. However, readers from countries with universal health insurance (that is, all other so-called "developed" countries) shouldn't dismiss this an American problem. While some conditions aren't in play, far too many still apply. At its core, this story is happening all around us, no matter where we live.

A complicated gaslighting

The Invisible Kingdom illuminates how the dynamics of conventional medicine obstruct and prevent people with chronic illness from receiving appropriate care. The issues fall into three categories.

Not being believed.

This is the one condition nearly universal to people with chronic illnesses and invisible disabilities: doctors discount and dismiss their patients' stories. When test results turn up negative, doctors -- at best -- shrug their shoulders and move on. At worst -- and frequently -- they assume that the patient is exaggerating, attention-seeking, or drug-seeking, or that their symptoms are the result of anxiety or depression. I venture to say that everyone -- and I do mean everyone -- with chronic illness has encountered this. A majority of doctors simply do not believe their patients. 

Instead of realizing or admitting that their diagnostic tests are inadequate -- that medical science is imperfect and incomplete, that it has not conquered every condition, that this patient's symptoms exceed either the doctor's own knowledge or the current limits of medical knowledge -- the doctor discounts or dismisses the patient. Rather than question the adequacy of the tests, the doctors question the validity of the individual's own experience. The Invisible Kingdom shows how one group of doctors who dealt with Lyme disease took this to extremes. They  

long seemed unwilling to acknowledge that patients were coming to them with their own knowledge. . . .  Instead of devoting compassion and energy to patients with persistent symptoms, many doctors focused on discrediting their testimony.

Hypochondria is a thing, as is Munchausen Syndrome. But those psychiatric conditions are relatively rare, and not difficult to diagnose. Most people do not seek the care of specialists for fun or out of compulsive need. It's exhausting -- physically, emotionally, and in the US, financially. The vast majority of sufferers are, in fact, suffering. Yet all too often, doctors attribute undiagnosed pain as evidence of a psychiatric condition.

More than one doctor told O'Rourke that "everyone is tired," or "it's normal to have some aches and pains as we get older". This was maddening to even read about! O'Rourke reminds us that most people have no trouble distinguishing between normal tiredness and all-encompassing, crippling fatigue. As she writes:

Just because a symptom is common -- and subjective -- does not mean a patient cannot tell the difference between a normal version of it and a pathological one, the way we experience the difference between the common cold and the flu.

I can't help but wonder why this dynamic is so common. One maverick autoimmune specialist O'Rourke interviews espouses the necessity of a personalized approach -- which is exactly the opposite of how western medicine operates.

Alongside the usual standardized protocols, [patients with unusual and persistent symptoms] clearly call for the tactics of personalized medicine, because the immune system is so complex -- and so individualized. . . . This complexity is a problem for the conventional medical system. . . . The conventional folks are very, very good at what they do. . . . But a patient with a constellation of symptoms that doesn't clearly fit a diagnosis is not somebody that they want to deal with. . . . Nothing is more threatening to who you think you are [as a doctor] than a patient with a problem you cannot solve.

Medical silos. 

As she searched for answers and relief, O'Rourke saw many specialists. Throughout, she was forced to coordinate all the results and manage her own care -- while enduring mind-bending physical pain, extreme fatigue, and the added stress of not being believed.

Insurance companies, and doctors who allow their practice to be driven by billing systems.

Insurance companies expect doctors to see patients for 10 minutes at a time, no matter what their needs, and to see massive numbers of patients every day. Chronically ill people can't fit their needs into this system, so the system shunts them to the margins. 

This is typically as true for publicly-funded systems as for private, for-profit healthcare. (BC's NDP government recently changed the provincial health authority's billing system in recognition of this barrier to care. It can be done!)

Alternative medicine may be useful, but is not a panacea

O'Rourke also sought help from practitioners of alternative or complimentary medicine. She had some good experiences, but she also brings a critical eye to this system. 

Complimentary medicine is typically very expensive, and not covered by insurance -- meaning, it is usually only available to people with privilege. Offerings run the gamut from those well supported by evidence to outright quackery. A person who is hurting and desperate, and who has been abandoned by conventional medicine, is easy prey.

However, alternative practitioners offer two things that conventional medicine does not: they believe their patients, and they have time for them. This is a powerful combination, and that power makes it a potentially dangerous (and incredibly expensive) path.

The mind-body link: a confusing picture

Complicating this picture is the undeniable link between the neurological system and the immune system. Simply put, our state of mind does impact our health. As everyone with chronic illness knows, stress can trigger and exacerbate symptoms. Yet this doesn't mean the illness is caused by stress, and it certainly doesn't mean our symptoms are psychosomatic or imagined.

It's a conundrum. Positive thinking will not make illness go away, yet negative thinking actually does make it worse. With some autoimmune conditions, hopefulness has been correlated with a lessening of symptoms. This confusing and seemingly contradictory reality can bolster the disbelieving doctor's suspicions. As O'Rourke's husband said at one point, "This seems like one of the hardest things about being sick in the way that you're sick: being sick makes you stressed. But being stressed makes you sicker."

O'Rourke writes about the growing field of psychoneuroimmunlogy: a new, greater understanding of the interactions between the nervous system and the immune system -- between body and mind -- is beginning to emerge.

One glimmer of hope is the emergence of autoimmunity centres, modeled on cancer centres -- a multidisciplinary approach, with same-day specialist appointments in the same facility, and cases discussed in a team setting. In her research (but unfortunately, not in time for her own illness), O'Rourke finds an automunine centre boasting 17 disciplines and a commitment to streamlined continuity of care. In this setting, physicians may spend hours meeting with patients and with one another, searching personalized answers.

Practitioners in this emergent field acknowledge that diagnostic tools are limited -- as they have been throughout medical history -- and that there is much medical science does not know. The research arm searches for more tools, while doctors from the clinical arm listen, believe, and brainstorm creative solutions.

Another sign of hope is the conventional medical community's recognition of long covid. Long covid has proven that medicine's understanding of viruses is flawed and incomplete. Many doctors are suffering from long covid, and this has apparently brought an ah-ha moment to treatment of viruses and autoimmune disease.

Social determinants of health

O'Rourke also reminds readers that systemic racism, substandard housing and nutrition, food deserts, intersectional bigotry, and other social determinants of health are always in play. As she fights for care, she is always aware that as a white, cis, educated, middle-class woman, she has access to care that so many others do not. Suffice to say that if the author found it nearly impossible to access appropriate care, we can assume that many others are left behind at the outset.

A story known to many

Meghan O'Rourke lost ten years of her life to this struggle -- ten years that should have been her most productive professional years, and her best childbearing years, as she did want to have a baby. She was in nearly constant pain, and subject to fatigue that made it impossible to function, with no way to predict or control when a cycle would strike. 

It's no wonder that O'Rourke became severely depressed, and at least one point, lost hope. That she continued to search for answers and function to whatever extent she was able is testament to remarkable inner strength, grit, resilience, and determination. Reading The Invisible Kingdom, I often thought of the original meaning of the Finnish word sisu (not the current, pop-culture meaning). Sisu is used to describe the Finns' national survival in the face of multiple Russian invasions. Meghan O'Rourke did the same.

I have never faced an illness as debilitating and mysterious as the one that O'Rourke writes about. But although my experience was more mild by comparison, the elements and the trajectory were very familiar. I believe most people with chronic illness, especially women, will also recognize the pattern.

I frequently say "I was misdiagnosed for seven years." But actually, my original diagnosis was correct. For insurance reasons, I had to see a different family doctor, and he threw out that initial, correct diagnosis, pronouncing it a "garbage can diagnosis" for a nonexistent syndrome. He decided I had a different condition. When my bloodwork did not confirm his diagnosis, he ignored the results. He supposedly knew of a cutting-edge treatment that was getting good results, and applied that to me. I now realize I was used in a long-term, nonconsensual treatment experiment. 

For seven years, I took the wrong medication, while my symptoms worsened and expanded. The medication negatively altered my digestive system and my metabolism. 

As my symptoms worsened, I became less active; eventually the joint pain became so severe that I was nearly sedentary. The wrong medication, inactivity, and stress-eating led to weight gain -- at which time my doctor declared that my joint pain was caused by my weight. In reality the cause and effect were exactly the opposite.

This doctor refused to refer me to a specialist, claiming a specialist would only confirm what we already knew. Of course, the insurance scheme included financial disincentives for doctors to make referrals.

I felt like I was falling apart. I felt desperate. Friends urged me to insist on a referral. When the doctor said I appeared to be anxious and stressed, and suggested I go on anti-depressants, that was the last straw. Once again, he was reversing cause and effect. I was anxious and stressed -- because I was in so much pain, and because he wouldn't help me. Not the other way around.

I insisted on my right to see a specialist, and the doctor finally wrote a referral. In one visit, the specialist made a diagnosis: the original diagnosis I had gotten seven years earlier, the one the family doctor threw out. I never returned to that family doctor, and I began the long road back to health. (If you are interested, the whole story is here. I share that link only in that it may help someone.) 

A vow of honesty

Meghan O'Rourke teases out the many threads that are woven into this story -- how an invisible, chronic illness impacts friendships, relationships, work life, family life, and worst of all, our very sense of self. O'Rourke is also a poet, and some of her metaphors and descriptions were too esoteric for me; other readers might find them exactly on point. Regardless, she brings a unique and compelling storytelling style to the issue. 

The Invisible Kingdom contains many reflections on illness, pain, and suffering from a wide spectrum of sources -- Susan Sontag, William Styron, Elaine Scarry, Barbara Ehrenreich, Alexander Pope, Bernie Siegel, Alice James, and Norman Cousins, among others, and a wealth of complex medical information rendered in plain language.

The book is equally notable for what it doesn't contain: there's no bright-siding. O'Rourke rejects "the wisdom narrative", where "illness is a vehicle for self-improvement and hard-won acceptance". She writes:

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering.
It is difficult to look at the shadows of physical suffering clearly, because to do so, I know, is to risk inviting depression, or a terrifying apprehension that the world is made of pain. But when I was at my sickest, I resolved that if I got well enough to write about my experience, I would not give false assurances. I would not write letters reassuring those I loved that my life had not been utterly compromised. Now that I am somewhat better, I can tell you the truth: When I was at my sickest, my life was utterly compromised, and my very sense of self was gone. When I was less sick -- and there were periods of relief in my illness -- I could step back from the experience and take pleasure in the vividness of the blue sky from my bedroom window. But I will not repeat falsehoods; I will not say that wisdom and growth mean I wouldn't have it any other way. I would have it the other way.

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