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Printed in the United States of America
Library of Congress Cataloging-in-Publication Data
Silver, J. K. (Julie K.), 1965–
Chronic pain and the family : a new guide / Julie K. Silver.
p. cm. — (The Harvard University Press family health guides)
Includes bibliographical references and index.
ISBN 0-674-01505-3 (alk. paper; cloth) — ISBN 0-674-01666-1 (paper)
1. Chronic pain—Patients—Family relationships—Popular works.
I. Title. II. Series.
RB127.S499 2004
616′.0472—dc22
2004047527
This book is dedicated to my mentors, an eclectic group of very
special people who have guided and inspired me both personally
and professionally. I am blessed by and grateful for their
presence in my life:
Dorothy Arnold
Diana Barrett
Walter Frontera
Lauro Halstead
Marc Shell
Contents
1 What Is Chronic Pain? 1
2 Effect on the Couple 20
3 Intimacy and Sexual Activity 35
4 Work Issues 45
5 Childbearing and Inheritance 57
6 Growing Up with a Parent in Pain 64
7 Chronic Pain in Children 75
8 The Extended Family 86
9 Emotional Changes and Depression 95
10 Medication Dependence and Addiction 104
11 Diagnosing Chronic Pain Conditions 118
12 Traditional Treatment Options 124
13 Complementary and Alternative Medicine 139
Afterword 148
Appendix: Resources 151
Suggested Reading 155
Notes 159
Acknowledgments 161
Index 163
chronic pain and the family
1
What Is Chronic Pain?
Pain is an inevitable part of the human experience. We are born frail
and vulnerable, and maturation does little to change our condition. Re-
gardless of age, we have practically no natural protection from attacks by
predators or even from the environment in harsh weather conditions.
What keeps us safe is our intelligence and the ability to come up with
methods to protect our soft skin, easily broken bones, and vulnerable vi-
tal organs. In fact, we humans live in mortal fear of even the slightest
wound, and we have devised elaborate mechanisms to protect ourselves.
Ironically, our intelligence is also the reason we suffer; our highly evolved
brains are able to process and interpret pain. Most living species don’t ex-
perience pain at all, or at least not in the manner that we humans do. So
we pay a price for our keen intellect—we know firsthand what it means
to suffer physical pain.
Although we all know what it’s like to feel pain, the experience means
something different to each of us. Thus deriving a definition for pain, an
intangible experience that differs from person to person, can be chal-
lenging. Among medical practitioners pain is defined as an “unpleasant
sensory and emotional experience associated with actual or potential tis-
sue damage.”
1
Despite this rather simple definition, most of us describe
pain in other ways. We may describe pain by its characteristics (for exam-
ple, sharp, burning, aching) or by its stimulus (hot, pricking, sharp). We
can talk about pain’s intensity (mild, moderate, severe) or use words to
describe how we view it (miserable, annoying, intolerable). Despite the
countless number of terms we can use to describe pain, however, there
are only two things we can know for sure about someone else’s pain: it’s
unpleasant and it’s theirs alone to experience physically.
But just because others can’t actually feel our pain doesn’t mean they
aren’t affected by it. Family members are significantly impacted when
one member is ill. When someone is chronically ill, as is the case with a
chronic pain condition, the family is often thrown into turmoil. Defining
how a family functions “normally” when everyone is healthy is nearly as
impossible as defining “normal” family functioning when someone be-
comes ill. After all, what is “normal” when someone’s world has been
irrevocably altered? How do people function normally when they are
plagued with pain, unable to work in their usual manner or maintain in-
timate relationships with their spouses? Similarly, what is normal for an
“unaffected” family member such as a child who, when a parent be-
comes ill, must suddenly be quiet in the house or take on extra responsi-
bilities and chores because the parent is unable to do them? Pain, in fact,
is the quintessential solitary experience only in that the person affected is
the only one who can physically feel the pain. In all other respects pain—
particularly chronic pain—is a familial experience that dramatically
changes the dynamics of the family as a unit and the functioning of the
individual members. This book addresses the impact of chronic pain on
the sufferer as well as on his or her family, and suggests ways to help ev-
eryone cope with the new reality.
The History of Pain
Humans have been documenting their pain since ancient times. We
have found evidence of suffering etched on Babylonian clay tablets, Per-
sian leathern documents, and parchment scrolls from Troy. Chinese acu-
puncture originated back in 2500 b.c. to alleviate pain, and we still use it
today. More recently, archaeologists have found interesting correlations
between afflictions of the past and those of the present. For example, Dr.
Juliet Rogers studied 3,000 skeletons from a graveyard in Barton-on-
Humber, a small village in north Lincolnshire, England. The bones she
studied were from the period 900–1850. Dr. Rogers found evidence of a
number of arthritic conditions including osteoarthritis, psoriatic arthri-
tis, and Reiter’s and Paget’s diseases. What she did not find was evidence
of rheumatoid arthritis. This led to the hypothesis that perhaps rheuma-
toid arthritis is a fairly “new” disease or at least one that is more common
now than it once was. In this way the past may help us understand ill-
2 what is chronic pain?
nesses we encounter now, though many questions will likely remain
unanswered. What is clear is that pain has been a consistent theme
throughout human history.
Ancient peoples had many different belief systems to explain pain and
illness in general. For example, in 8000 b.c. healers used very sharp in-
struments to cut holes in the skulls of people while they were still alive—
a procedure now known as trepanning. We don’t know for sure why this
was done, but one theory is that these holes let out the “bad demons” that
caused illness. Similarly, Ancient Egyptians believed that gods or spirits
of the dead caused illnesses. In ancient China, people believed in two op-
posing unifying forces, the Yin (feminine, negative, passive) and the
Yang (masculine, positive, active). Sickness occurred when these forces
were out of sync with each other. Physicians were often religious men
whose treatment centered on their theological beliefs and could include
prayers, exorcisms, and incantations, among other things.
As the understanding of pain evolved, modern societies began to focus
on the physical diagnosis of the underlying problem and then treatment,
if available, for that condition. Yet despite many advances in pain medi-
cine, there is currently no one theory to explain why pain occurs. This
can be frustrating not only for the person who is suffering but for the en-
tire family, all of whom want “answers” when they go to the doctor. Al-
though we have come a long way since army surgeons in the 1500s
treated what they thought were poisonous gunshot wounds by pouring
burning oil over them, there is still much we don’t know about pain and
healing. It is beyond the scope of this book to discuss the current debates
in pain medicine. Rather, I will focus on how pain, when it persists and
becomes chronic, affects the person who is ill and his or her loved ones.
If you are living with chronic pain, it’s important for you to understand
how your condition and your reactions to it affect the people you love. If
you are the loved one of someone who is suffering chronic pain, you
need to know how best to respond to a situation that can often transform
the entire family. Reading this book is a great place to begin. Obviously,
you can’t absorb or take over someone else’s pain, but you can certainly
imagine what pain must be like for your loved one. Great writers and art-
ists through the ages have depicted pain with pictures and words to allow
us to experience vicariously the pain of others. For example, in the Iliad,
what is chronic pain? 3
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