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The Vulnerability of Pain
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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
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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'm worried if I miss much more work—since
my injury, you know, ain't service-connected—they will put me on early retiie-
ment. With a kid in graduate school and the twins in college, we can't afford to
live on a pension.
Even a disability pension/ which would be more lucrative than a
retirement pension, and which a number of policemen m his depart-
ment have received, vrould be a significant financial burden for the
Harris famfly. Work is a serious strain not only because of the pain but also
because Howie Harris feels caught between a blustering, ineffective
boss and a force that/ while overall a good one/ contains several
incompetent members.
It's all politics. The boss is totally unqualified. He just knows how to get in people's
way, bellow, and make a real hash of things. He got the job because of who he
knew. . . . But he messes up so often, is so little help and, you know, he's got an
absolutely impossible personality: a complete egotist, always wants it his way,
can't say no. He treats me like dirt. He treats everyone that way. But some days
it's really, you know, the last straw. He gets me furious and frustrated. And I've
got to watch my back. What am I doing getting upset?
Howie Harris s view of work has changed over the years. When
he started out in the police force he strived to be an outstanding policeman. Now he thinks of hunself as a survivor, trying to hold
on without missing too many days of work and without making any serious mistakes. Vulnerable is a. word he applies to his job as well
as his back. There is the possibility that owing to financial and
manpower constraints/ which seem tighter each year, he could be
pensioned off on early retirement. Howie Harris's view is brutally
frank: "I've got to hold on as long as I can. Each day is a success for
me, but it won't mean anything if I lose my job before the kids make
it through school. Even after that/ what would I do without this job? Who would hire me at my age with my back?"
The work situation is one he feels he can just barely manage. I
get by. The boys know about the back and cover for me when it's
real bad. I'm not supposed to be in a desk job/ but that's what I have made it. And most of the patrolmen are excellent. They help me
make a go." He organizes the workday so as to minimize the strain
iThe Vulnerability of Pain and the Pain of Vulnerability 67
Son his back. Because the pain is worse in the late afternoon/ he has
^an-anged to begin his work early and leave early. He delegates to his
^assistant work that is physically difficult to perform. The paperwork is cumbersome, and he feels the limitations of his education, He
thinks that he is working to capacity. At home, whenever he is not
consumed with his pain he is consumed with the job. He thinks about the physical problems that he can't handle; he prepares him-
self to endure the pressures of the next workday; he fights to control
his increasing anger at his boss; and he worries either about covering
up his limitations or about what will happen when they are finally obvious to all/ especially his superiors.
His wife puts the matter starkly:
There are two Howies at home. One worries about the pain, the other about the
work. He is totally absorbed by these two things. There is none of him left over
for the family, for having a good time, simply for laughing. It seems like years since
we laughed together. Look at him! Look at his face, his eyes. You can see it,too.
That comment sums up a family life that has become deeply distressed. Ellen/ Howie's wife of thirty-five years, is a tall, attrac-
tive, assertive woman with tinted blond Kair/ who dominates the
conversation when they are together and has a sharp tongue and
tendency to say what she feels at the moment. For the first decade
of their married life, she was a housewife barely able to manage
with a frequently absent husband, demanding small children, and a dependent aunt. Under the pressure she became depressed and
threatened divorce; but then she pulled herself together. "As Howie
got worse, I got better. I went back to school, finished my degree,
and got myself a job/ a good job.I gave up on Howie. I wasn't going
to wait for him to ask i^e out. I'd never get out of the house. I started
going out on my own with my friends."
EUen is bitter about her husband's illness.
It's miserable, it's ruined our family life. He has no time for the kids. Couldn't stand
the noise. Couldn't play sports with them. Couldn't even go on family picnics or
vacations. And he isn't much better with me, though we communicate better now.
He stays by himself. I know he's in pain. But every day? Can it always be that bad?
I think he is part of the problem. He's a bit of a hypochondriac. Once he starts
worrying about the pain, he can't get off it. We have no personal life. We haven't
had sexual relations for years because of his back. Finally I've lost interest. I feel
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68 THE ILLNESS NARRATIVES:
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sad for him. He was so different when we were young. But I feel sad for me, too,
and for the kids. I hate to say it, but he knows it's true: they haven't had a father. :^ Sj
All right, I'm bitter about it. So would you, if you were in my shoes.
Ellen also fears that Howie will lose his job/ but her fear seems
to stem from a. reason different from his. She feels he would be
impossible if he were home all the time. The work distracts him, gets him out of the house, and gives him something besides pain to
manage and talk about. Howie recognizes this/ too: "What would
I do? The paw. would be worse. If I were home all day, I'd think of
it all day. I do when I'm home now. The work is interesting and I
like it and it takes my mind off my body, at least for a while." Howie's three children resent their father. In recent years the
children have increasingly expressed their frustration and anger to
him. The oldest son says: "He's a ghost. We never see him. In his
room, off to work, in his room. He never spends time with us. He
seems like a stranger."
"I can't stomach hearing about the pain," complains one of the
twins. "How do we know it's as serious as he says? I mean, I believe
him but you can't see it. He isn't dying or anything like that,"
Howie routinely confronts in others—family members, co-work-
ers, physicians—a questioning attitude, a doubting that his pain is
as bad as he says it is. "That's the worst thing about pain. You can't
see it. You can't know what it's like unless. God help you, you suffer
from it. I feel like people don't believe me at times, and it makes me
mad/ really mad. What the hell do they think I am, a maUngerer?"
The surgeries have had one clearly positive effect, in Howie's view.
They have created icons of his travail, scars that he can show people,
that he can touch to assure himself that there is something "physi-
cally wrong" with his back. After each of his surgeries, he felt that
his family, fellow police officers, and doctors became more sympa-
thetic. As he contemplates yet another major surgical procedure,
this latent social function of surgery is a large part of the decision
making, since his overall judgment about the surgeries is that they have made things worse.
Howard Harris is deeply pessimistic. Nothing, he believes, can
cure his problem or even reverse any of the damage. The pain will
slowly but ineluctably worsen. The evidence for this is that it takes
KfThe Vulnerability of Pain and the Pain of Vulnerability 69
^longer to recover from each exacerbation and the baseline of every-
;B day pain is higher, For each of the last several years he has missed
i more than one month of work. This year he has missed even more
I time. He sees no way to prevent things from worsening. He visits
f his doctors at least once a week to receive nerve blocks, injections
? of narcotic analgesics/ prescriptions for the latest pain medicine, and
neurological and orthopedic reassessment.
During the course of our mterviews/ he reported giving up prayer,
because he felt it had had no effect. He does not believe his dis-
ability is a divine punishment or test. In one of his few moments
of relaxation m over ten hours of interviews, he responded to my
question about what role God played in his iUness by offering a rare but weak smQe, "He's got more important things to think about/
and if he isn't, he should."
Like'50 percent of patients with chronic pain syndrome and also
a significant number of the chronically medically ill in general,
Howie Harris meets the official criteria for major depressive dis-
order. But his depressive mood represents demoralization from the
life of pain more than anything else; and his sleep, appetite/ and
energy disturbance—and even his guilt, low self-esteem, and
thoughts about death (all part of the ofBdal diagnostic criteria)— can be traced directly to his experience of severe pain. So it is
difficult to know whether he truly is suffering a discrete psychiatric disorder or, more likely; is simply deeply distressed owing to his
chronic medical problem. The fact that he has been treated by pain experts with therapeutic doses of antidepressants without any e£fect
on the pain or demoralization makes this second possibility seem
more reasonable. On the other hand/ his family history, which
includes depression and alcoholism in his father and paternal grand-
father/ places him at greater risk for this psychiatric disturbance.
Still, Howie's illness account, like that of most pam patients,
strongly suggests depression as a consequence/ not a cause/ of pain.
Howard Harris comes from a Dutch family. His father was a
plumber who drank heavily, physically abused his wife/ and di- voiced her when Howie was five years old. Howie has not been in
contact with him since then. "\ never really knew him. I heard bad
things about him from my family, but I hardly remember being with him. I grew up with a sense of not having a father."
70 THH ILLNESS NARRATIVES' a
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When Howie was nine, his mother remarried. He felt that from -
the first days of her second marriage she withdrew from him, becoming distant and cold. She went on to have two children with
her second husband. Howie moved in with distant relatives at age
twelve and lived with them until he joined the army at twenty. Over the years his ties to his mother weakened to the point that,
although they live only a few miles apart, he has seen her only once
the past year. He never developed a close relationship with his
stepfather.
Howie describes himself as having been a strong and very inde-
pendent person when he was young and as having slowly, under the
pressure of the chronic pain, become dependent and weak. Howie
Harris has always been quiet, reserved/ dour. "We never spoke
much in my family. Only when I was sick did I receive much
attention." His mother suffered from frequent backaches. She
would withdraw to her room for days at a time when the pain was
severe, "She was an irritable mother generally/ and when she was
having pain, we knew she would scream at us if we got too close
and bothered her. We learned to stay away." Howie also learned to
pay careful attention to complaints of pain, to read them as signify-
ing both physical and emotional states. But his mother did not
redprocate when his own pain began.
When I speak to her she tells me about her illnesses, her diabetes, her hypertension,
her backaches, but never asks me about mine. She never came to see me when I was
in the hospital. Not once! When I have seen her I have nothing to say. She stfll
frightens me more than angers [me]. She's tough as nails. I guess I might as well
be dead as far as she is concerned.
(It is intriguing that on several occasions Howie mistakenly referred
to his mother as "my stepmother" and "my stepsister/')
His reserved personality contrasts with his wife's. "She's a real
talker. She goes on and on. I used to tune her out, but I've learned
to listen." When a major problem occurs, Ellen jumps right in, while
Howie holds back. "But if she can't handle things quickly, which she usually does, she gets hysterical. I stay cahn and work things out
slowly. My judgment is better than hers. But later on I feel the effect in my back—the stress makes it worse afterwards." Ellen has in-
creasingly come to dominate their relationship, though she has al-
ways played the central role in the family. (For example, in our
|?The Vulnerability of Pain and the Pain of Vulnerability 7]|
interview together Howie routinely deferred to Ellen, although he
J looked very uncomfortable when she talked at length about him.) Howie knows that, like his sons, his wife sees him as weak and
dislikes him for his weakness.
Among the aspects of his personality that have been transformed
by the pain are his trust in others and his confidence in himself and his body. "It has been terrible for me, I know, even though I can't
change it/ I have become tense, self-conscious, and hopeless. I'm
easily hurt and feel others don't respect me." Howie never used the
term with me/ but several times I felt he could have added the term
spineless — that. this image was part of how he regarded himself. For
example, his wife has pushed him to go to school and get some kind of degree so that he can earn a promotion, Howie contends that
although he would like to do these things, his back problem pre- vents him from studying. It is a transparent excuse even to him/ and
on one occasion he admitted that his back was not the only reason
he did not seek promotion. As already noted, he feels overextended
at work, at the frontier of his competence.
Wilber Mason/ Howie Harris's former primary care physician/ is
deeply frustrated with Howie's care. He believes that his patient is
a somatizer who amplifies his symptoms and disability. He Hnds Harris a problem patient who tries his patience and at times infuri- ates him.
He's pathetic. He's half his own problem. He's basically given up. What can I do?
He comes to me in pain, I've got to give him something. I don't feel there is much
we can do really. I can't bear to see his name on the list of patients in my clinic. I think in the year I have seen him regularly he has never once said he was feeling
better or smiled or been optimistic. This pain problem is getting him down and ~h^s
clearly gotten to his family and is getting to me, too. I feel up against the wall. I've
sent him to a.Q the speciaUsts and used all the latest drugs. I don't think we are any longer dealing with a disease; this pain has become his way of life.
Interpreldtion
The chief meanings of Howie Harris's pain are transparent, availa-
ble for virtually anyone to see. Dominating them all is the sense of
extreme vubierability and the strict self-limitations he has placed on
^.'13
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72 THE ILLNESS NARRATIVES^
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his Ufe in order to prevent serious episodes and complications of the%
pain. Each twinge and cramp is carefully tracked. A minute change ^
is observed assiduously, and so on, so that his entire life is his pain.
The pain controls him.
The central mechanical image of a broken spine that literally could split apart undergirds his pain complaints and behaviors. If ^
one knows this image and if one can understand how strongly
Howie believes in it/ then most of his illness behavior is explicable.
But the weak spine and vulnerability to falling apart are also meta-
phors of another set of fears that relate to Howie's job/ his marriage,
his childhood experience of growing up with an absent father and emotionally distant mother/ his personal fears of inadequacy, ineffi-
cacy, and dependence. The illness has taken on these meanings from
Howie's life world. I don't know whether these meanings actually
contributed to the onset of the pain/ but they certainly influence the
course of his pain. Whatever role/ if any/ his marital problems may
have played in those early days of the pain, at present the pain
behavior expresses those tensions just as clearly, if indirectly, as
Ellen's cutting commentary on her husband.
The pain itself cannot be directly measured; but its effect on Howie's (and Ellen's and others') behavior can. For the patient and
family this deeply frustrating/ self-defeating cycle of problems is
what is meant when they talk of the pain. Removing the pain would
mean removing these hurtful experiences and despairing relation-
ships. Chronic pain registers even in the expression and actions of
Howie's former physician, who has been converted to a frustrating
anger and hopelessness every bit as deep as that of the patient and
the family. Where is the iUness? In the back, all right. But what about its presence in Howie's sense of self/ in his interpretation of
his childhood, in his relationship with Ellen and his mother, in the reactions of his children, in his work setting/ in his doctor? The pain
is the centa-al idiom of a network of communication and negotiation.
In a sense, the network is in pain.
In books on pain or in professional conferences on chronic pain,
most of the time is devoted to neurophysiology and physiological pathology/ some to psychiatry, increasingly some to behavior. But
after interviewing hundreds of persons who/ like Howie, have pain
infiltrating every aspect of their lives, I feel it is reasonable to ask,
iFhe Vulnerability of Pain and the Pain of Vulnerability 73
j1(/Vhere in that book or that conference is chronic illness as a way
^of life7 Iam convinced that understanding the meanings of pain and :;:{radng out the dynamics of somatization in the fullness of the life
'\(Sof pain patients • will show all those who are willing to see (and
^.Ipatients, families, and practitioners have gone through so much that
^I^they often are not) that there is no such thing as the pain patient (or, %for that matter, the patient with chronic iUness of any type). The
^single-minded pursuit of a single ideal treatment for all but a few
^Satypical cases can also be readily shown to be a dangerous myth.
%The patient s improvement requires changes in vicious cycles of
^meaning and experience that deeply affect (and are affected by) the ^patient s local social system.
^y What is needed is a kind of care radically different from that now ^routinely available. For Howie Harris that means treatment that
Jg would address simultaneously his behavioral impairment/ the dis-
Stress in his social relationships, and his demoralization and self -
^defeating personality pattern. Treatment should begin with the sys-
^'1 tematic evahiatkm of the psychosodal crises in his life experience. S, It should indude therapeutic interventions directed at each of these
^ major problems and integrated within a comprehensive clinical ap-
^ preach to pain. Such an approach would seek not merely to control
^ the pain but especially to prevent the chronicity and disability. Even ® the demoralization and anger of Howie Harris's care givers, which
^ contribute to ineffective care/ should be described and dealt with in ^< this comprehensive framework.
^ Indeed, I have come to believe that this life in pain and the others ^ that follow teach us that our science as much as our clinical practice
^ is at fault in the repeated failure to understand pain and its sources;
^ we are unwilling to take the meanings of pain as seriously as we
^ take its biology. There is a brute reality to those meanings, which
^; are so visibly valid in Howie Harris's world that we can talk about
^ them reliably and with precision. That is to say, the science of pain
^ must include social science interpretations together with biomedkal
explanations. It must bring to bear knowledge of the economic/
^ political/ and social psychological sides of pain. But it is also possible to ask more of the interpretation of illness
^ meaning than it can provide/ to make claims for social science that
;; are dangerously Utopian. Psychoanalysis and interpretive cultural
74 THE ILLNESS NARRATIVBS.
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analysis often involve themselves in excessive speculation and un-|
warranted assurance about hidden meanings. Perhaps as important;
as the recognition of the different meanings of illness is the recogni-^ tion of the limits of interpretation. Much more than I have venturedl?
can be read into the story of Howie Harris's pain, and doubtless^
readers will do so. Is his pain linked to passive dependence created;
by the absence of a dose relationship with a paternal Hgure? Does?; the pain relate to the vivid model of his mother's pain, which is the:
only aspect of her life with which he symbolically expresses his: powerful need to identify? Does the fact that she attended to hum:
as a child only when he was sick and has paid scant attention to his back pain mean that its persistence is an angry, desperate cry for,
love? Or ^s his pain part of a self-defeating, passive, hostile commu-
nicative system in his marriage, which persists because it creates ai;
strange balance in a family system that would otherwise disinte-
grate? All of us should ask of any interpretation, including these, Is it
valid? We should be willing to stop at that point where validity is
uncertain. Four kinds of validity are at stake here: correspondence
to reality, coherence, usefulness in the context of a person's prob-
lem, and aesthetic value. Each can take us in a different direction.
For the clinician the third is what counts. An interpretation is valid if it is useful in the treatment of the patient to diminish disability
and suffering. For the researcher the others may be equally or even
more important. I have barely scratched the surface of the question
of meaning in this account of illness.
The Pain of Living
I think of the nestling fallen into the deep grass,
The lurtle gasping in the dusty rubble of the highway, The paralytic stunned in the tub, and the water rising,_ All things innocent, hapless, forsaken.
—THEODORE ROETHKB
(1982, 227)
There is no way of observing social cause and effect in a pure environment, so a residue of indeterminacy obscures all causal
generalizations—not because the causal nexus itself remains un-
certain (that is the case, too, with natural events) but because the problem of identifying the elements to be included in that nexus is inherently indeterminate.
—ROBERT HEHBRONER
(1986, 189)
If Howie Harris's story is life dominated by pain/ Rudolph Kristiva's
is dose to the opposite: pain dominated by life. Rudolph is a thirty- eight-year-old white unmarried male, of Bulgarian-Jewish back-
; ground, with chronic abdominal pain of fifteen years duration. He
works as an accounts clerk in the payroll office of a major West
Coast research organization. During almost three years of observa-
tion/ Rudolph Kristiva experienced low-grade, persistent intestinal
pain that periodically would become severe and debilitating. He
also described bouts of pain in the shoulders and chest wall, as well as dizziness/ weakness/ and constipation. The .pain and related
symptoms do not cause him to miss many days from work, nor,
most of the time, do they interfere in a major way with his job or personal life. They are rather, as we shall see/ an additional source
of worry in a life devoted to fears and frustrations.