When
you develop a long-term illness, like
Chronic Fatigue Syndrome or fibromyalgia, you may feel like you have
entered a new world in which all the rules of life have changed and
there is no obvious way forward. This perplexing situation can make
you feel helpless. But there are many things you can do to gain
control and improve your well being. This book will show you how to
take an active role in managing your illness.
We’ll
start by looking at how long-term illness is different from short-term
illness and terminal illness. Short-term or acute illnesses are
temporary problems that usually end because of medical treatment or
the passage of time. Terminal illness, in contrast, is a
life-threatening condition.
Perhaps
when you first became ill with CFS or fibromyalgia, you thought you
had a short-term illness, but one that kept hanging on. At some point,
however, you realized that you had entered a new realm. You were
confronted by the fact that your illness was neither a temporary
interruption of your life, nor a life threatening condition, but a
third type of problem: an illness that lingered, but was neither
self-limiting, nor fatal. Instead of resuming your previous life after
a brief interruption or struggling with a terminal illness, you were
faced with having to adjust to long-term symptoms and limitations.
Not
only does chronic illness impose limits and bring symptoms that
persist, it touches many parts of your life. It affects your ability
to work, your relationships, your moods, your hopes and dreams for the
future, and even your sense of who you are. Chronic illness is hard to
manage because its effects
are so comprehensive. Living with CFS or fibromyalgia means much more
than managing symptoms.
Complicating the challenge, there is
an interaction between your illness and other parts of your life. Your
illness impinges on many aspects of your life and, in turn, is
affected by these other parts. (See diagram.) For example,
serious illness reduces your activity level (arrow
pointing out from CFS/FM to Activity), but if you try to do more than
your body can tolerate, you will experience higher symptoms (arrow
pointing in). Doing too much repeatedly can result in greater limits.
Interactions
of illness and other factors
The
same pattern of reciprocal effects is true for other elements as well.
Take the
relation of illness and stress. Living with symptoms on a daily basis
is inherently stressful. In addition, illness often creates financial
pressures, complicates relationships and brings great uncertainty
about the future. In all these ways, illness increases stress. But
stress, in turn, can make symptoms worse. Even moderate amounts of
stress can greatly intensify symptoms, creating a feedback loop in
which symptoms and our reaction to them intensify one another.
The
same two-way relationship applies to feelings as
well. Emotions like worry, anger, depression and grief are normal
reactions to having chronic illness, understandable responses to a
situation in which life is disrupted and routine replaced with
uncertainty. These emotional reactions to being ill may be
particularly intense in CFS and fibromyalgia, because these illnesses
seem to make people labile, meaning that their emotions are stronger
than before and harder to control. The strength of emotions can create
a vicious cycle in which illness intensifies emotions and then
emotions, in turn, intensify symptoms. For example, people who are
depressed have a lower threshold for pain. Also, pain can be
intensified by anger, because anger usually creates muscle tension.
Intensified symptoms, in turn, may generate more worry and pessimism.
There
are similar interactions between illness and relationships, and
illness and money. When someone is ill for an extended period,
relationships often suffer, because the patient feels discomfort and
has less energy, and because others have their lives disrupted, too.
But relationship problems, like not feeling understood or worry about
being abandoned, create new stresses, that in turn make symptoms
worse. Illness affects finances by reducing income. Financial worries
then increase stress, which translates into higher symptoms.
In
summary, CFS and fibromyalgia have comprehensive effects, touching
many parts of your life. They are much more than simple medical
problems. A plan for managing them has to address all its effects, not
just symptoms.
Your
Unique Situation
Just
as chronic illness is comprehensive in its effects, so too is it
tremendously varied. Each
person’s case of CFS or fibromyalgia is different, both medically
and in other ways. The severity of symptoms ranges widely. Some
people have relatively mild symptoms, while others may be bedridden
and most fall on various points in between. Also, there are many
different patterns of symptoms. Some people may have pain as their major complaint, while for others the
main problem is fatigue, brain fog or poor sleep.
Adding
to the complexity, each person’s illness may vary over time. Some
symptoms may disappear, only to be replaced by new ones. Some people
may have a relatively stable course, while others may fluctuate
between times of severe symptoms and times of remission.
Finally,
CFS and fibromyalgia may be complicated by the presence of one or more
other chronic illnesses. About two thirds of the people in our groups,
for example, struggle with two or more medical problems. The most
common pattern is people who have both CFS and fibromyalgia, but
frequently people with either CFS, fibromyalgia or both also have one
or more other medical issues, such as arthritis, back and spinal
problems, depression, food and chemical allergies, irritable bowel
syndrome (IBS), lupus, myofascial pain, sleep disorders like apnea and
restless legs syndrome, and thyroid problems.
The
bottom line: each person's illness is different. To treat your illness
effectively, you need to understand your unique situation.
One
way to begin understanding your individual circumstances is to
identify the severity of your illness and your symptom pattern. To get
an idea of how your situation compares to others’, place yourself on
the CFS/Fibromyalgia Rating
Scale. If there is a discrepancy between your score based on
activity level and your score based on symptoms,
rate yourself using the severity of your symptoms. Most students in
our course have rated themselves between 25 and 45 at the start of the
course, but we have had people across almost the full range of the
scale.
Just
as people with CFS and fibromyalgia differ in their symptoms and in
the severity of their illness, so do they come from many different
life situations. A majority are married, but many are single. They are
of many different ages and life circumstances. To understand your
situation requires that you assess how your unique life situation
affects your illness, especially in the areas of resources and
relationships.
Some
patients find their financial situations have changed little since
they became ill. Perhaps they have a mild case of CFS or fibromyalgia
and can continue to work. Or, maybe they have family members who work
or they receive disability payments that replace their former income.
For others, however, financial pressures can be great, even
overwhelming. Some people live alone with little or no income and no
financial cushion. Many are somewhere in between, stressed to some
degree, but able to maintain a lifestyle more or less similar to the
one they had before becoming ill.
Chronic
illness changes relationships, creating new obligations and also new
strains and frustrations. You may be single and struggle alone with
your illness. Even if you live with a family, you may feel isolated
and not understood. All
family members are challenged to live differently; some may have to
assume additional responsibilities. Relationships can be great sources
of support, sources of stress or both.
In
addition to your illness and your life circumstances, your unique
situation includes two other significant factors: your coping skills
and your attitude. The hopeful thing about both is that, unlike some
other elements, they are not fixed. You may not be able to change the
fact that you have CFS or fibromyalgia, but you can learn new and more
effective ways to deal with your illness.
Research
has proven that people can learn effective coping skills through brief
self-help classes. One such program is the Arthritis Self-Help course,
which was developed at Stanford
University in the
late 1970’s and has now been taken by over 300,000 people. This
six-session class on coping with problems such as pain, loss of
function and depression is taught by volunteers, many of whom are
arthritis patients. Patients taking the class have significantly
reduced their pain and depression, and increased their activity level.
Research
has shown that the patients who improve the most through the class are
those who believe in their ability to exercise some control over their
illness. These people do not deny they are sick or hold unrealistic
hopes for recovery, but they have confidence that they can find things
to make their lives better. Research studies of the class have shown
that patients are able to learn new attitudes and skills, and that a
brief, volunteer-led course can produce significant change. (I worked
on this program, and it was one model I used in developing our
self-help course.)
Similar
programs at UCLA and Harvard for skin cancer and chronic pain have
produced comparable results. Patients who took a six-session course on
coping with skin cancer showed an increase in life expectancy in
comparison to other skin cancer patients. And patients who took a
course on combating chronic pain reduced their visits to doctors,
their levels of anxiety and depression, and their experience of pain.
Research
led by Dean Ornish produced a reduction in heart disease. Using
lifestyle changes such as a low-fat diet, exercise and group support,
the patients in Ornish’s program reversed symptoms of heart disease.
In other research, people with diabetes have been able to reduce by
half their risk of heart attacks and strokes by using a stricter than
usual regimen of blood testing and insulin injections.
All
these programs are based on the principle that how we live with
chronic illness can change its effects on us and may even change the
course of the disease. They demonstrate that using good coping skills
can make a significant difference to quality of life.
A
second form of self-help, the Twelve Step movement that began with
Alcoholics Anonymous, offers further evidence of the power of people
to help themselves. Groups in this tradition are based on the idea
that people who share a common condition can band together to help one
another. Typically, groups of this type provide a set of ideas that
help people regain control of their lives through the support,
encouragement and inspiration of the group.
The
principles of the self-help approach apply to people with CFS and
fibromyalgia. As with other life problems, learning to manage chronic
illness involves adapting to new circumstances by making adjustments
to daily habits and routines. Mutual support can be very useful in
this process.
In addition to
coping skills, attitude is important to living well with long-term
illness. The attitude
that seems to help can be characterized as being at the same time both
realistic and optimistic. I call it acceptance
Dean
Anderson, a recovered CFS patient whose experience is described in
Chapter 10, provides an example. He writes that after failing to
improve by determination and hard work, he came to a certain kind of
acceptance that he says is not resignation, but rather “an
acceptance of the reality of [my] illness and of the need to lead a
different kind of life, perhaps for the rest of my life.” He goes on
to say that “the ‘effort’ required to recover from CFS is an
exercise in discipline and hopefulness, not determination and
striving.” He describes the discipline he believes is required as
the ability “to recognize and adhere to one’s known limitations
and to follow a strict regimen without periodically lapsing.”
The
Six Challenges of Long-Term Illness
As
suggested above, long-term illnesses like Chronic Fatigue Syndrome and
fibromyalgia confront you with different challenges than
short-term illness. The chapters that follow are organized around six
of these challenges. The long-term nature of CFS and FM suggests the
first two. To live well with your illness, you must adopt an active
role as a patient and you must deal with ongoing symptoms. The other
four challenges are rooted in the fact that CFS and fibromyalgia are
more than simple medical problems; they touch many parts of your life.
We will focus on four parts: stress, emotions, relationships and loss.
Becoming a Self-Manager
With
long-term illnesses like CFS and fibromyalgia, you have a different
role as a patient than with acute illnesses. With short-term
illnesses, you often can rely on a doctor to provide a solution or the
illness resolves itself. But CFS and fibromyalgia are not
self-limiting and don’t yet have a medical cure. Ongoing conditions
that can’t be cured need to be managed and, whether or not you want
the role, you are the day-to-day manager of your condition. You can
find resources for becoming a self-manager of CFS or FM in Chapters 4
to 7.
Managing
Symptoms
CFS
and fibromyalgia usually have multiple symptoms, and
each symptom often has more than one cause. Most patients respond by
using a variety of strategies, which may include medications,
alternative treatments and lifestyle changes. For a discussion of a
range of treatment options for the symptoms of CFS and FM, see Chapter
8. Because I share Dr. Lapp’s philosophy,
as expressed in the Foreword, that CFS and FM are “best managed with
adaptation and lifestyle changes,” Chapters 9 through 12 are devoted
to how you can improve your life by making changes in your daily
habits and routines.
Controlling
Stress
Stress
can be a challenge for anyone, but it is doubly difficult for people
with CFS or
fibromyalgia. First, being chronically ill adds new stresses to the
challenges of everyday life. The additional stressors include the
discomfort of symptoms, isolation, financial pressure, strained
relationships and uncertainty about the future. Second, CFS and
fibromyalgia are very stress-sensitive illnesses. They seem to reset
the body’s “stress thermostat,”
so that the effects of a given level of stress are greater than they
would be for a healthy person. Controlling stress can have a big
effect on both symptoms and quality of life. For ways to
reduce
and prevent stress, plus step-by-step instructions for several
relaxation procedures, see Chapter
13.
Managing
Emotions
Strong
emotions like fear, anger,
grief and depression are common reactions to chronic illness. Such
emotions are a normal and understandable response to being in a
situation in which life is disrupted and routine is replaced with
uncertainty. Unfortunately, CFS and fibromyalgia seem to make
emotional reactions even stronger than before and harder to control.
For a discussion of how to use self-help strategies and medications to
manage depression, anxiety and anger, see Chapter
14.
Building
Support
Serious
illnesses like CFS and fibromyalgia create great strains in families
and test other relationships as well. The unpredictability of symptoms
and of emotions makes daily life difficult for everyone. Family
members and friends may take on new, additional responsibilities while
suffering losses themselves. At the same time, patients often feel
isolated both physically and psychologically. For strategies to help
you respond to the frustrations in relationships created by long-term
illness, see Chapter 15.
Finding
Meaning
Chronic
illness brings many serious losses, including the loss of familiar
roles, loss of income and loss of control over our bodies. The
pervasiveness of loss presents us with one of our biggest challenges:
bringing new meaning to life when much has been taken away. Life with
long-term illness can be a spiritual journey. Illness provides an
opportunity to reevaluate your life and recast it in a new way. You
may not be able to restore your old life or live the life you had
planned, but you can create a different kind of life than you had
before becoming ill. For ideas on coming to terms with loss and
building a new life, see Chapter
16.
In
Summary
Both
Chronic Fatigue Syndrome and fibromyalgia have comprehensive effects,
touching many parts of patients’ lives. They are much more than
simple medical problems. Rather than lending themselves to being
resolved, they are conditions that patients have to learn to manage.
Self-management is not a cure for CFS or fibromyalgia, but it provides
tools for coping that can also promote improvement and even recovery
in some cases. When offered through a group, self-help also includes
support, inspiration and encouragement from fellow patients.
This book is based on a belief in the power of
self-help, the conviction that patients can change the effects of
long-term illness through their efforts. The upcoming chapters contain
many ideas for things you can do to feel better. These strategies are
not aimed at curing CFS or fibromyalgia, but they can help reduce pain
and discomfort, bring greater stability, and lessen psychological
suffering.
Self-management
of long-term illness is no magic bullet; it requires hard work and
patience. I hope you can join the many patients who find that they can
affect their symptom level and quality of life significantly by
accepting responsibility for those things under their control.
References
Anderson,
Dean. “Recovery from
CFIDS,” CFIDS Chronicle: Winter 1996,
27-29.
Caudill, Margaret. Manage Pain
Before It Manages You. New York: Guilford Press, 1995. (Describes
Harvard pain management program.)
Goleman, Daniel and Joel Gurin, eds. Mind
/ Body Medicine. Yonkers, NY: Consumers Union, 1993. (See Chapter
10 for description of Arthritis Self-Help course.)
Spiegel,
David. Living Beyond
Limits. New York: Times Books, 1993. (Describes UCLA skin cancer
groups as well as Spiegel’s own breast cancer support groups.)
