Inside Chronic Pain

An Intimate and Critical Account

Lous Heshusius

• Publisher: ILR Press
• Year: 2011
• eBook ISBN: 9780801457548
• Topic: Medicine
• Subtopic: Anesthesiology & Pain Management

"With Lous Heshusius as a guide, pain patients can learn much about the perils of a modern health-care odyssey. Health professionals can learn how an articulate middle-class female white patient thinks (with all that thinking entails) when her world is irreversibly altered by pain. She does not promise happy endings. Chronic pain is like that. From the rare intersection in this text between patient narrative and physician response, however, readers may construct a dialogue on pain in our time that cannot fail to bring plentiful opportunities for personal insight and professional enlightenment."—from the Foreword by David B. MorrisChronic pain, which affects 70 million people in the United States alone—more than diabetes, cancer, and heart disease combined—is a major public health issue that remains poorly understood both within the health care system and by those closest to the people it afflicts. This book examines the experience of pain in ways that could significantly improve how patients and practitioners deal with pain. It is the first volume of a new collection of titles within the acclaimed Culture and Politics of Health Care Work series called How Patients Think, intended to give voice to the concerns of patients about their own medical care and the formulation of health policy.Since surviving a near-fatal car accident, Lous Heshusius has suffered from chronic pain for more than a decade, forcing her to give up her career as a professor of education. Inside Chronic Pain, based in part on the pain journal Heshusius keeps, is a stunning memoir of a life lived in constant pain as well as an insightful and often critical account of the inadequacies of the health care system—from physicians to hospitals and health insurance companies—to understand chronic pain and treat those who suffer from it. Through her own frequently frustrating experiences, she shows how health care providers often ignore, deny, or incorrectly treat chronic pain at immense cost to both the patient and the health care system. She also offers cogent suggestions on improving the quality and outcome of chronic pain care and management, using her encounters with exceptional medical professionals as models.Inside Chronic Pain deals with pain's dramatic and destructive effects on one's sense of self and identity. It chronicles the chaos that takes place, the paralyzing effect of severe pain, the changes in personality that ensue, and the corrosive effects of severe pain on the ability to attend to day-to-day tasks. It describes how one's social life falls apart and isolation takes over. It also relates moments of happiness and beauty and describes how rooting the self in the present is crucial in managing pain. A unique feature of Inside Chronic Pain is the clinical commentary by Dr. Scott M. Fishman, president of the American Pain Foundation. Fishman has long tried to improve the lives of patients like Heshusius. His medical perspective on her very human narrative will help physicians and other clinicians better understand and treat patients with chronic pain.

1 A Life Altered

The Descent

The emergency room nurse told me I had been in a serious accident about two hours north of Toronto. “You will feel pain in places where you never thought you could have pain,” she said. I had no memory of the accident—and still don’t. I had visited another land, noticing nothing of police cars and ambulances. I had been to an alternate, beautiful reality. When I came to, I felt myself inside a brilliant light. Opening my eyes, I saw smiling faces of young men against a clear blue sky. The color of the air was of golden sunshine. The world felt wonderful. I felt rested. Not a touch of fatigue. I felt such joy. I was in a space lighter and more beautiful than I had ever known, than I knew was possible. A space I wanted to dwell in forever.

But it rained. It was late September, the afternoon darkening. I was five minutes away from a friend’s house when I did not see the car coming. The faces above me belonged to three paramedics who were holding a large umbrella over me. I saw no sky. There was no sun. Just worried faces looking at me. I was on a stretcher. They were getting ready to put me in the ambulance. I learned later that had my bones not been so strong, as indicated by bone density tests, my neck would have been broken. I might have gone to that other side forever. Often, in the terror caused by the pain that followed, I have wished for that. Such a painless journey it would have been. Straight to paradise.

When the nurse said those words, I remember thinking: “Oh, you don’t know how healthy I am. I’m never sick! I’ll recover from this in no time!” But she was right. What she didn’t tell me, however, was that I would see numerous doctors and specialists and that still my pain would continue. Now, after more than eleven years, three family doctors, two neurospecialists, four pain specialists, two neurological surgeons, a psychiatrist, an anesthesiologist, a neuropsychiatrist, an osteopathic physician, three chiropractors, a holistic physician, a wellness physician, two acupuncturists, two physiotherapy programs, three individual physiotherapists, one emotional release therapist, a marijuana specialist, a pain/trauma therapist, two psychotherapists, a cognitive therapist, two osteopaths, a biofeedback therapist, two craniosacral therapists, ten days in a private residential pain clinic, about a dozen massage therapists, uncounted painkillers, and a losing fight with the insurance company, I continue to suffer daily from stabbing neck and head pain, from migraines, from referred pain throughout my left shoulder and upper back, and from neuropathic pain that causes swelling in my neck and at the back of my skull and that causes a stinging and burning sensation.

As time went on, I came to understand that the words “chronic pain” essentially mean “You have had pain now for over half a year and we have no real clue what to do about it.” Then, guided by the war-and-control metaphors of much conventional medicine, many drugs are prescribed, toxic substances injected, and burn-or-cut-the-nerves procedures carried out, none of which offer certainty, all of which carry risks. There was no one to help me sort out the piecemeal and contradictory information doctors and specialists would provide, nearly all of which was new to me. One pain specialist did his best, but his full waiting room and his fast mind—way too fast for me—did not often allow for a coherent explanation in the short time he had available.

I used to divide my life into “Before” and “After”: before and after I had children; before and after I left my marriage; before and after the love of my life appeared and had to part. Clearly, these continue to be significant milestones in my life. But nothing has divided in two the before and after of my life as did the accident that left me a victim of the chronic pain that has tormented me ever since. Albert Schweitzer said, “We all must die. But if I can save him from days of torture, that is what I feel is my great and ever new privilege. Pain is a more terrible lord of mankind than even death himself.”1

Death. How often have I wished I could lie down and simply die. I can put it in writing: had it not been for my two daughters, I would no longer be here. A Google search on the relation between chronic pain and suicide brings up almost a million hits. Many articles note a significantly higher rate of suicide ideation and suicide attempts among those living with chronic pain than for the general population. The Johns Hopkins Arthritis Center reports a two to three times higher rate of actual suicides for chronic pain patients than for the general population.2 In his review of research dealing with the impact of chronic pain on life habits, James Henry, scientific director of the Michael G. DeGroote Institute for Pain Research and Care at McMaster University, cites reports that among medical illnesses, chronic pain is the second major cause of suicide after bipolar disorder, and ahead of depression and psychotic disorders.3

Ongoing intense pain then is for many chronic pain sufferers worse than the idea of death. Yet no one responded when I expressed suicidal thoughts, which during the worst years were present on a daily basis and about which, out of absolute despair, I tried to talk with six health-care professionals. “Let’s not go there,” was the immediate response from one of them. The others simply said nothing. Tellingly, however, it did show up in some of the reports they wrote to each other.

Many times I have promised God, who I had set aside some forty years ago for the notion of Spirit or Creative Force, that I will never complain about anything anymore if He or She would relieve me from this pain. Many times I have moaned and whispered, “Please, let it pass!” with the strong sense I was directing my prayer to something more personal than a spirit or a force. “Ik kan het niet meer,” I moaned, falling back into Dutch, my native tongue. “I can’t go on anymore.” Though I left the Netherlands over forty years ago, my mother tongue still rises up in me in moments of great intensity or great despair.

Why I Write This Book: Witnessing Lives in Pain

Carol Jay Levy in A Pained Life, her account of her struggle with pain from trigeminal neuralgia, gives as the reason for not writing her story sooner that the story would not have had a happy ending.4 When at last a neurological implant took her pain away she could write because her story now had a happy ending. How we want happy endings. In The Wounded Storyteller Arthur Frank refers to stories that tell about restoring the former state of health as “restitution narratives,” which, he says, are the ones that get attention.5 But the world also needs to witness the stories of pain that go on with no end in sight. Those where health is not restored. Those that end in despair. In death. How else can the torment of chronic pain be understood, rather than greatly underestimated, as I now know it is? The entire range of pain stories needs to be acknowledged to encourage political and social progress on the pain-management front.

It is difficult to imagine a life in chronic pain. Apart from being invisible and inexpressible, the intensity, frequency, and duration of pain attacks differ for everyone and can change over time. NBC’s The Today Show aired a series on chronic pain beginning on March 28, 2005. It noted six defining characteristics: (1) when it interferes with activity, (2) when it interferes with concentration, (3) when it disrupts sleep, (4) when one self-medicates, (5) when it strains relationships, and (6) when it appears regularly—meaning three times a month or more. These defining characteristics, while offering an initial screen, are so broad that they do not provide a means to diagnose the severity of the pain or to imagine what a life in pain is like. The ubiquitous 1–10 pain scale does not do so either.

I once attended a demonstration organized by a company that designs products for pain relief. Before the demonstration began, the presenter asked, “How many of you, right now, have a pain level of 10 on a scale from 1 to 10, in which 10 is the worst pain you can imagine?” About a dozen people raised their hands. They had been walking around, chatting, and having refreshments before the demonstration started. I was stunned. At a 10 I am on the floor, motionless, with gunshots going off in my head. Some months later I am in my specialist’s office for injections. I can hear every word said by the patient behind the curtain on the cot next to mine. The specialist asks, “What’s your pain level today on a scale of 1 to 10?”

“About a 10.” I am stunned again. At a 10 level of pain I could not have possibly come to the clinic. When my turn comes I tell him what I overheard. “At a 10 I am motionless on the floor.” He explains that the scale—used only for intrapersonal comparison—has no comparative value. One person’s level 6 bears no necessary comparison to another person’s level 6. A 2007 special issue on chronic pain by Newsweek calls this scale—so far, according to the magazine, the best that clinicians have been able to come up with—“absurdly imprecise.”6

If the goal is to be precise, it must be said that the pain scale is imprecise even for intrapersonal comparisons. Every time I have to indicate where my pain is on this scale, I hesitate. Typically, the pain patient is asked to mark the scale according to how the pain is “Now” or “Today.” There is of course a distinct difference between a 2 and a 9, or between a 3 and 8. But the shorter the distances between numbers, the more the meanings of these distances start to blur. After eleven years of this, I still don’t know what, exactly, the difference between a 6 and a 7 is or between a 6 and an 8. Nor what a 3 really means. Or a 4. Just as important, the doctor has no idea. There is nothing to back up the number. Therefore, a 5 is not always a 5. It depends on my day. The pain’s fluctuations—often within minutes or within hours—blur these numbers. My mood of the day blurs these numbers. Whether or not I have taken painkillers blurs these numbers. My inexact memory of what the pain was like last time I marked the scale a certain way—which, in order for the scale to be valid, one would need to assume I can remember—blurs these numbers. The way a particular doctor behaves toward me blurs these numbers.

Fluctuations in chronic pain are typical. I never make morning appointments, because the pain is typically too severe for me to go anywhere. Thus my afternoon marks are a serious understatement of the severity of the pain I live with. I tell doctors about the morning pain, but we largely believe only what we can see, and doctors are not exempt from this human tendency—in fact, their scientific training reinforces it. A physician who read the manuscript for this book told me, “I will never again say to myself when listening to a patient talking about pain, ’It can’t be that bad—she seems pretty normal to me.’”

One of my pain specialists told me of his frustration over how to define chronic pain to an insurance representative. He finally said, “Imagine someone stabbing you in the back, not once, not twice, but many times a day, day after day, month after month, year after year, and you don’t know why he is stabbing you.” He shook his head as he told me this.

I tried to explain chronic pain to an acquaintance who couldn’t understand why I couldn’t teach anymore or take a trip, and why I couldn’t just take some pain killers and wouldn’t that get rid of the pain? Trying to come up with a picture that would make the invisible visible, I heard myself say, “Imagine you wake up every morning and you need to go to a clinic down the road for painful treatments that take a couple of hours and for which only a mild anesthetic can be given. You have to do that every day, at least once, sometimes more often—for years on end. Possibly for the rest of your life.” “Oh…” he said, falling silent, struggling to get that image into his head. Coming up with concrete images that resemble what the chronic pain experience is like may be crucial in the struggle to give voice to this insidious disease that few understand and many don’t even believe is real.

Another way to show what living chronically in pain is like is to register the frequency and intensity of the pain and the consequences for daily life. Using various pain diaries I kept for medical and legal reasons during the worst years and estimating the number of hours for the subsequent years, I can roughly calculate the number of hours I have suffered from pain. However, these hours are not all the same when it comes to pain intensity. The literature on pain rarely distinguishes between levels of pain or systematically indicates their different consequences. For me, the following three levels of pain have been almost separate illnesses each with its own set of consequences.

Severe pain (for me, I would mark between an 8 and 10 rating on the scale) means to me pain so intense that it completely disables. Pain that paralyzes. Pain that erases the mind and can make you irrational. Pain that makes it impossible to work, to drive, to converse, to sleep. Pain that is hardly responsive to medication. The kind of pain that makes you suicidal. That kind of pain lives off the scale, somewhere between 11 and infinity. For then, all of me is pain. It is an altered state in which the notion of ranking is no longer valid. To call total pain a 10, or any number at all, feels strange—a number only makes sense if there is another number to compare it with. When pain is total, there is no entity with which to compare it.

Considerable pain (a 5–7 rating) to me is pain that, with dulling medication, allows one to go through the necessary daily activities at home, though not much more. It is pain that does not allow you to work at your job. Pain that makes it dangerous to drive and severely restricts your social life. Pain that exhausts and demands constant attention.

Light pain (a 1–4 rating) is pain that nags, that interferes with clear thinking, with work, with enjoying company. It is pain that responds better to medication and allows for normal home and work activities to go on, but pain that nevertheless brings fatigue, distracts, and makes you less effective at whatever you are doing.

Taken together, I experienced approximately 8,700 hours of severe pain, 7,200 hours of considerable pain, and 11,500 hours of light pain. In all, over 27,000 hours of pain over an eleven-year period. This means an average of approximately seven hours of pain each day, every day. Immediately following the accident there were hours, and sometimes days, with little or no pain. Since my improvement after prolotherapy, there is still pain every day but of less intensity and duration. During the worst four years, however, there was pain all day and all night. Can anyone, not knowing chronic pain, imagine 27,000 hours of pain? The picture is worse, in fact. For these thousands of hours of pain are not predictable as to when they will decide to show up. Therefore, every hour is an hour with pain either present or hovering around. Life becomes pain. I become pain. A number on a scale cannot be a witness to this.

Newsweek’s observation that the pain scale is “absurdly imprecise,” which seems to imply there should be a more precise scale, is not that precise itself. Given pain’s invisibility and subjectivity, the notion of “precise” is besides the point: it is not within the realm of the possible. To come up with a 1–10 scale to “measure” pain fits the values of the scientific paradigm in which knowledge is seen to demand measurement in order to be considered valid and reliable. Within this paradigm, to measure means to quantify—to assign numbers to things and to relations between things. This demands counting. But what is there to count?

Here is more or less what goes through my mind when the scale is put in front of me for the umpteenth time: Here we go again. What to mark. Last time I think I said my pain was a 6. But I don’t exactly remember how bad the pain was when I circled a 6. Or, I think: I feel only light pain right now. Perhaps I feel a 3. But five minutes from now it may be a 2 or a 4. Becoming impatient with the scale and with my inability to get it “right”—because getting it right is impossible—I just circle a 3. Done. I give the whole thing back to the secretary.

For myself, given I experience three distinct levels of pain, with distinctly different concrete consequences for the reality of my day-to-day life, a 1–3 scale—if we have to have a scale—would be more accurate and reliable as an indicator of the severity of pain I live with, particularly if the numbers are accompanied with descriptors of these actual consequences. Some form of a scale combining numbers and consequences might be more helpful for both diagnosis and treatmen...

Table of contents

• Note from the Series Editors
• Foreword
• Acknowledgments
• Introduction
• 1 A Life Altered
• 2 That Which Has No Words, That Which Cannot Be Seen
• 3 Pain and the Self
• 4 Pain and the World of Pain Management
• 5 Pain Medicine
• 6 On Science and Time
• 7 Pain and Others
• 8 Where Are We with Chronic Pain? A Patient’s Perspective
• Clinical Commentary
• Resource Guide
• Notes