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The Vulnerability of Pain

and the Pain of

Vulnerability

•esent

most

For the person in pain, so incontestably and unnegotiably pres is it that "having pain" may come to be thought of as the vibrant example of what it is to "have certainty," while for the other person it is so elusive that "hearing about pain" may exist as the primary model of what it is "to have doubt." Thus pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed.

—ELAINE SCARRY

(1985, 4)

. . . I am bound

Upon a wheel of fire that mine own tears Do scald like molten lead.

—WILUAM SHAKESPEARE

King Lear (IV.vii.46-48)

Chronic pain is a major public health concern in North American society (Osterweis et al. 1987). Whether in the form of disabling chronic lower back pain or severe migraine headaches or in the

somewhatless common types affecting neck/ face, chest/ abdomen,

arms and legs/ or the whole body, chronic pain syndromes are an

increasingly common source of disability in our time (Stone 1984).

Paradoxically, the medical profession is dangerous for chronic pain

patients. Medical care fosters addiction to narcotic analgesic drugs/

polypharmacy (the use of multiple drugs) with medications that

.^he Vulnerability- of Pain and the Pain of Vulnerability 57

exert serious side effects, overuse of expensive and risky tests, un-

^necessary surgery that can produce serious damage/ and obstacles to

[leaving the disabled role. The disability system contributes as well

:by its active disincentives for the patient to undertake rehabilitation land to return to work. Both systems create anger and frustration for

patients and families (Katon et al. 1982; Turner and Chapman 1982).

If there is a single experience shared by virtually all chronic pain

patients it is that at some point those around them—chiefly practi-

'tioners, but also at times family members—come to question the

authenticity of the patient's experience of pain. This response con-

tributes powerfully to patients dissatisfaction with the professional treatment system and to their search for alternatives. Chronic pain

discloses that the training and methods of health professionals ap-

pear to prevent them from effectively caring for the chronically ffl.

Redprocally, chronic pain patients are the bete noire of many health professionals, who come to find them excessively demanding, hos-

tile, and undermining of care. A duet of escalating antagonism en-

sues, much to the detriment of the protagonists.

Chronic pain involves one of the most common processes in the

human experience of illness worldwide, a process I will refer to by

the inelegant but revealing name somaHzafion. Somatization is the

commuiucation of personal and interpersonal problems m a physi-

cal idiom of distress and a pattern of behavior that emphasizes the

seeking of medical help. Somatization is a sociophysiological con-

tinuum of experience: at one end are cases in which patients com-

plain of bodily ailments in the absence of any pathological bodily processes—either as a conscious act (malingering/ which is unusual

and easy to detect) or as an unconscious expression of life problems

(so-called conversion/ which is more common); at the other end are

cases in which patients who are experiencing the disordered physi-

ology of medical or psychiatric disease amplify beyond explainable levels their symptoms and the impairment in functioning those

symptoms create, usually without being aware of their exaggera-

tion. In the latter category of patients, which is by far the largest,

three types of influences intensify the illness experience and pro-

mate overutilization of health care services. These are social (partic-

ularly family and work) conditions that encourage expressions of distress, cultural idioms of misery that use a language of bodily

58 THE ILLNESS NARRATIVES

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complaints to represent personal and interpersonal problems, and

individual psychological characteristics (often anxiety, depression,

or personality disorders).

In its minor form, somatization is something each of us encoun-

ters in daily life. When we are under considerable stress, our auto-

nomic nervous system; neuroendocrine axis, and limbic system of

the brain are aroused. As a result/ there are changes in our physiol-

ogy, including increased pulse and breathing rates, difficulty sleep-

ing, dizziness, tingling and numbness in hands and feet/ ringing in

the ears/ headaches, abdominal discomfort/ constipation or diarrhea,

frequent urination, dry mouth and throat, difficulty swallowing,

dyspepsia, tightness in the chest, and change in menstrual patterns,

among a wide assortment of symptoms of stress. Not everyone

experiences all of these complaints. For some there may be one or

two that are most troubling, for others a wider range. Under stress,

moreover/ we scan our bodily processes more frequently and with

greater attention to bodily change. We also fix with anxious concern

on such change as a sign of a potentially serious health problem. Could that slight pressure in my chest be a sign of a heart condition? Are the cramps I feel in my lower abdomen serious? Should I take

something for this headache? Is the blood on the toilet paper due

to hemorrhoids? Should I go see my physician about this problem? All of us/ of course/ are experiencing bodily sensations all the

time. Most of the time we pay little attention to this twinge or that

cramp. But when we are experiencing stressful events in our lives,

when these events have disturbed our equilibrium and make us feel

anxious or frightened/ when symptoms carry potentially important

cultural meaning (for example/ could blood in the stool be an early sign of colon cancer?), or when symptoms are of special personal

significance (such as slight congestion for an asthmatic or a muscle

spasm in the back for a patient with degenerative disc disease of the spine), rather than normalize them we vigilantly attend to them. In

the very process of worrying over them/ we amplify the experience

of the symptoms and take some action. We may avoid certain situa-

tions (stay home from school or work, break a date, cancel a trip)/

change our diet or pattern of exercise/ take medicine, visit a practi-

tioner. Social activities and problems, then, get transformed, either

in or out of awareness, into bodily experience. When our personal-

?Fhe Vukierability of Pain and the Pain of Vulnerability 59

?ity type is such that we exaggerate the significance of stress or

ianxiously ruminate about our bodily processes/ then amplification

-:of physical symptoms is enhanced, Our cognitive style, aftective

state, and verbal and nonverbal forms of communication contribute

to the effect.

Where stress occurs over a prolonged period or where a chronic

medical or psychiatric disorder is present, as I have noted. in the

preceding chapters, existing pathology may be exaggerated by the meanings of situations and relationships, or by institutional con-

straints such as disability claims. But such somatization also stems

from our prior experience of the symptoms and our current an-

tidpatory fears of, and need to control, symptom exacerbation. That

is to say/ somatization occurs routinely to patients with asthma/

heart disease, arthritis, diabetes, and chronic pain syndromes, as

does its opposite/ minimization and denial of symptoms. The expe-

rience of chronic illness provides personal training m both ways of

responding to symptoms. Physicians contribute to somatization in

several ways: they may help to confir.m the patients' suspicions that

there is something worth worrying about; or they may medicalize

personal or interpersonal problems, during the process coming to

disregard the stress that provoked the complaints while focusing

only on the complaints themselves. Families, too/ often contribute

to somatization by untoward patterns of responding to, and there-

fore inadvertently encouraging, certain forms of complaints.

In cases of chronic pain, as we shall soon see/ the problem is

magnified. For chronic pain syndromes are almost by deBnition conditions in which the degree of pathology does not seem to ex-

plain the severity of perceived pain or the limitations in bodily functioning the pain produces. In this setting the pain patient feels

pressure to convince self and others that the pain is real—hence the

unwillingness of many pain patients to accept psychosodal expla-

nations that appear to deny that their pain is founded in a real"

bodily experience deserving of somatic remedies and a legitimate

medical sick role.

With this as an introduction/ we are prepared to examine the lives

of pain patients for examples of the different meanings of chronic

pain and to consider the reciprocal influence of meanings (cultural,

personal, situational) on pain and pain on meanings. Over the past

60 THE ILLNESS NARKATIVEsC

IB.'ri^ fifteen years I have treated or studied more than two thousand

patients with chronic pain syndromes. From these case records I

have selected three lives that illustrate certain of the illness mean-

ings and somatization experiences we have discussed. I will of

course highlight similarities, but more important are the differences in the lives. For it is my contention that chronic iUness, though it

creates undeniable similarities owing to shared problems and

though it sharpens recognition of certain uniformities in the human

condition, is as distinctive as the lived experience of different in-

dividuals. Because in the end it is the lived experience of different

individuals. The first case vignette is an illustration of pain as a way

of life. As Emily Dickinson (herself a pain patient) wrote:

Pain—has an Element of Blank—

It cannot recollect

When it began—or if there were

A time when it was not—

It has no Future—but itself—

Its Infinite realms contain

Its Past—enlightened to perceive

New Periods—of Pain.

(from Johnson 3970, 323-24)

The reader should be aware that the emphasis in each of these

lives of pain patients is on their experience as revealed by my

interpretation of their narratives. I do not spend much time on their

treatment, nor do I recommend in this context a specific course of

therapy. It is not my purpose in chapters 3 through 5 to advance a

particular therapeutic paradigm. I do that explicitly in chapter 15,

when we wiU revisit certain of these cases to see what could be done

to relieve their suffering and lessen their disability.

The Vulnerable Police Lieutenant

My first impression of Howard Harris was of vulnerability. This six foot-seven inch, broad-shouldered, craggy-faced man in his late

fifties, with thinning light brown hair and electric green eyes, has

The Vulnerability of Pain and the Pain of Vulnerability 61

a rigid posture controlling a tentative, mincing gait. Howie—as he

is ubiquitously known in the small city in Delaware where he is a

police lieutenant—conveys his disability without saying a word/

almost m pantomime. In one hand he carries everywhere with him

a white cushion shaped for his lower spine. His other hand touches

the back of each piece of solid furniture as if he wanted to be sure

which could be relied on to support him in the event that his back were to give way and he were suddenly to fall. That same hand,

when he sits, tends to stroke the back of nearby chairs, making an

observer think that he is comparing the stability of their spines with

that of his own.

Howie sits bolt upright, both feet on the floor about one foot

apart, his lower back and upper torso rigid. Every few minutes he

grimaces/ and every twenty to thirty minutes he stands up stiffly

and gently moves his spine from side to side while firmly gripping

the back of the chair he has previously judged to be the steadiest. Periodically/ the furrows of his grimace deepen, his mouth opens

into a near perfect oval, and his eyes fill with tears, as he endures

a jolt of pain. Watching hun, you feel he is doing all he can to keep

from yelling and—once you learn the image m his mind—literally

falling apart. After a few seconds his hand carefully touches his lower back and begins to gently rub the muscles and the spine.

There is a constant alertness to his gaze, a hypervigUance that be-

speaks his expectation that nothing about his back can be taken for

granted and that defensive strategies to reduce the pain and its

effects are best employed before the pain strikes anew. Howie acts

as if his spine could give way at any moment/ which is wholly m

keeping with his profound fear that should he fail to protect his fragile back it could "break."

"That's how I feet, like it could break, and I would fall to the

ground in terrible pain. My back would split into pieces and wouldn't hold together anymore; and the pain would be unbear-

able." This is what he told me at the first of the meetings we had

as part of a research project on chronic pain,

Howie Harris has gone through almost every available orthodox

and alternative treatment for his chronic lower back pain during the

twenty years that it has, as he puts it, "screwed up my life." He has

seen dozens of physicians of almost every variety: orthopedists,

neurosurgeons, neurologists, anesthesiologists cum pain experts, in-

62 THE ILLNESS NARRATIVES

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ternists, family physicians, rehabilitation experts. He has also vis-

ited members of many of the other health professions that surround

pain clinics: nurse practitioners/ physical therapists, acupuncturists/

medical hypnotists, and experts in biofeedback/ meditation, behav-

ioral medicine, massage, and hydrotherapy. He has attended pain

clinics, pain classes, and pain groups; he has read medical as well as

self-help books on the back. Lieutenant Harris has had four major

surgical procedures on his spine and, in spite of feeling that the pain became much worse after each; is fearfully contemplating a fifth.

"The fusion/ you see, wasn't good. My back's unstable. I kind of

picture it as the spine being split apart. What I need is a kind of glue to hold the pieces together." He has also taken, by his reckoning,

almost fifty pain medications, including powerful narcotics/ to sev-

eral of which he became addicted. There have been other serious

side effects of these drugs: most notably, anemia and allergic rashes.

Howie Harris now receives weekly nerve blocks, and he formerly

wore an electrical stimulator to block the transmission of pain

through the spinal cord. He also wore various braces and corsets in

the past. He sleeps in a special bed, sits in a specially designed chair,

and spends thirty to forty minutes each day doing exercises, "pos-

tural strengthening" movements/ and meditation. In addition to

biomedical professionals he has consulted several chiropractors,

health food advisers/ a polarity therapist, a fundamentalist minister

who does charismatic healing, and an expert in Korean martial arts.

During the two years of our interviews, Howie consulted several

psychologists, a psychiatrist/ and a practitioner of traditional Chi- nese medicine. He has also employed a great variety of self-treat-

ments and therapies recommended by family members/ friends, and

co-workers/ including heat/ ice packs/ liniment rubs, mustard plas-

ters, herbal poultices, tonics, special foods and diet, orthopedic

shoes; rest, and activity, to mention just a few.

Some degree of pain is present every day/ but it greatly increases

from time to time, forcing him to take to bed, sometimes to scream

into his pillow. The words he most commonly uses to express his

pain are "radiating," "burning," a stiffness in the exact center of

my back," "a. jolt of pain tearing through the nerves and muscles."

Reading through the list of adjectives provided by the McGUl Pain Questionnaire, a standard checklist used to assess the quality, de-

The Vulnerability of Pain and the Pain of Vulnerability 63

gree, and pattern of pain/ Howie circles "pulsing/ flashing, stabbing,

sharp, gnawing/ burning, hot/ stinging, tender, exhausted, fearful,

punishing/ annoying, tearing/ nagging to characterize the pain and

the way it makes him feel. At its worst the pain is "horrible/" much

worse than the severest toothache/ headache, or stomachache he has

experienced. Sudden movement, lifting, and walking can make the

pain worse. Of all the treatments he has undertaken/ only ice packs,

rest, and medication make the pain less intense, though nothing

makes it completely disappear. A limited amount of pain (3 to 4 on a scale of 10) nags his back all day. More severe pain comes in

clusters lasting days or weeks. Such clusters occur at most several

times each month and at least once every few months. "Extreme

pain/7 which Howie mentions with his deepest grimace/ his eyes dilated/ tearful and intensely focused in front of him in an expres-

sion approaching horror/ lasts only a few hours and occurs very

infrequently. Yet it is so terrible that he confided in me once it would be better to be dead than have to experience it again—

although he immediately added, "And I'm a born-again Christian and would never consider suicide." It reduces him to the state of a

cringing, terrified survivor feeling utterly helpless and devastated,

barely able to hold on. Parn comes with movement, either during or after. Reaching for

something in the kitchen, bending over to pick up a small garbage bag/ twisting to lift up the receiver of the telephone, leaning the

wrong way when driving the car, helping his wife lift a bag of groceries, stretching his spine while showering, tripping over an

unevenness in the floor of the police station, being thrown about in

a speeding squad car, bending the wrong way at his desk to grab a

Hle, even doing the therapeutic exercises—aU can trigger a flash of

pain that radiates downward and upward from the small of his back.

Not knowing which of these .frequent jolts will actually escalate into a cluster/ Howie responds to each as if it could be an early

omen, the pathognomonic feeling that begins another cycle of in-

tense hurt. Indeed/ Howie doesn't respond so much as anticipate. He

waits for the pain. He seeks out its earliest sensation. He attempts

to "catch it early," "keep it from developing," "prevent it from

getting worse."

Howie Harris was once a bruising lineman on the local high

^!,

64 THE ILLNESS NARRATIVBSSI

school football team, a former building contractor accustomed to:

regularly lifting a hundred-pound load and walking with it up a;;ffl long work ramp, a one-time bouncer and champion arm wrestler in s'^

a neighborhood tavern, a decorated Korean War veteran, a cop who ^,,1

prided himself on being "tough as nails." He has been transformed

by his illness.

It changed me. I've become fearful, afraid of injuring my back, I never thought

about, worried about getting hurt. But now all I think about is that damn pain. I

don't want it to get worse. I can't tolerate it. I'm afraid of it. Yeah, me, I'm afraid

of it. I'll be honest with ya, I haven't told anyone else, doc, I think it's turning me

into a coward.

Often Howie cannot tell what has worsened the pain/ but retro-

spectively he pieces together an image of what probably happened. Pain, to his way of thinking, can be a residue of a very stressful day

at work, of doing more than he should around the house/ of giving

in to the urge to throw a ball with his sons, of not being constantly

on guard/ prepared to defend his vulnerable spine. Pain is most

likely to bother him at home; when he is with his family/ before leaving for or after coming back from an outing/ upon returning

from work, or while thinking about how he is going to make it through the next workday.

Pain leads to withdrawal, to isolation. He goes into his room,

locks the door, closes the drapes, turns off the light/ and lies on the

bed; he tries to rest, to find a position that "reduces the tension of

the muscles/ with an ice pack against his back to "cool the hot;

burning nerves/7 During such an episode he cannot talk to others

or the pain worsens; he cannot tolerate noise, light/ or "pressure."

He can't even tolerate his own thoughts:

I just want it to be blank, dark, no thoughts. Then slowly I begin to feel things ease

up, the tension lessens. I feel the muscles relax and the pain decreases gradually,

but I now know it will be better. That's maybe when I feel most relieved. I can

relax. I can feel it improve. But sometimes it can take hours or days to reach that

point, that moment when I feel the pain lessen, at Brst very slightly, then more and

The pain began before Howie Harris joined his hometown police force/ when he was assisting in the building of a church in a distant

yphe Vuhierability of Pain and the Pain of Vnbierability 65

Stown. The project had fallen behind schedule/ and Howie felt under

^pressure to keep up the pace of work. A problem occurred involving

a heavy piece of equipment. Rather than wait for help and delay

work further, Howie attempted to lift it hunself.

I lifted it aU right, but something seemed to snap. Then I was on the ground in

agony. All the X-rays and tests showed nothing—except muscle spasm. But I know

something bad had happened right there in the center. I knew, I knew even though

it seemed to get better real quickly. Before then I was a different man. I was big

and strong, could do just about anything I felt. Afterwards I knew something had

broken. I had really hurt myself. I would have to be careful of my back, protect

it. I never felt vuherable before that: not in the tavern, not in the army, not in

work. A few weeks later I was throwing a ball to my small son and I turned I guess

too quickly and, wow, I felt that bolt of pain right there in the small of my back.

I knew then it wouldn't be the same. I had to try to learn what I could and couldn't

do. Now there isn't much I can do.

After leaving the building site because of fear of reinjuring his back, and not having a disability leave, Howie jumped at an oppor-

tunity to Join the police department. The pay was lower/ but he felt that he could do the job with a smaller chance of reinjuring his back and that the job offered more security for the future. At the time

of the initial injury, Howie was under some pressure in his family

life. His wife had just given birth to twins and felt overwhelmed in caring for them/ an older son/ and her infirm aunt (who had recently

moved m with them after a debilitating stroke). Against her wishes, Howie had left home to manage the distant construction project. He

had felt guilty about leaving her in such a difficult situation, and the

guilt worsened when the project was delayed. "We had always had

a communication problem. I never said very much generally. And

I didn't talk the job decision over with her. I just did it; it involved a lot of money, and I just went and did it."

Over the years, in spite of the worsening pain/ Howie Harris

moved up the ranks of the small police department until, as lieuten-

ant, he was second in command. He thinks he might have made it

to captain if he hadn't frequently missed days because of the pain

and the surgeries. But surprisingly he does not feel frustrated by his

career experience.

"I'm not even a high school graduate, see. I really shouldn't be lieutenant, I'm'over

my head and I know it. I can barely keep up with the paperwork. I don't really want

66 THE ILLNESS NARRATIVES

VSS'4S IBII;M^1 l!!®'^;-!S:i

the responsibility. I don't want any more pressure. With my back as it is, I've got

all I can do to complete a day's work. I&ap

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