The
Art of Getting Well:
5 steps to maximizing health when you have a chronic condition
Paperback
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ISBN 0-89793-356-7
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David Spero, RN
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|
Chapter
1:
Studies show life is hard.
"One
thing I learned early. Being a victim just doesn't work."
- AIDS survivor Bob Lawrence
This book is about getting well, when life seems weighted against
the possibility of our doing so. It explains how we can recover
our health and improve our lives, despite "chronic"
problems for which medicine has no cure. In these pages, you will
find all the ideas and inspiration you need for successful self-care,
ways to get better even in difficult circumstances.
Here's an example of what we're up against, and how self-care
helps. When Cindy Wong was 45, she already had hypertension, thyroid
disease, and clinical depression. "I wasn't taking care of
myself," she remembers, which is understandable, since her
husband had left her, with a rebellious daughter, aging parents,
and a stressful job. "I didn't complain," she says.
"In our culture, you're not supposed to."
Then she found herself in the Emergency Room, bleeding heavily
from what turned out to be uterine cancer. Facing yet another
illness, Cindy got fed up:
"Lying there, waiting for surgery, I promised 'If I make
it through this, I am going to start doing something for myself.'
I couldn't have told you what, but I'd been taking care of everyone
but me, and it had to change. Afterward, I went to the Health
Education office [of her hospital] to see what they had. I signed
up for stress reduction programs and stretching classes. Later,
I started exercising and meditating."
"It took me years to realize I had to put myself first.
I cut back work to four days a week. I still take care of my parents;
I'm still there for my daughter, but I make sure I get to my programs
and do my meditation every day. My self-esteem is higher, because
I'm taking time out for myself. My family relationships are actually
better than ever; I have more energy, and my health has been improving."
Cindy isn't out of the woods yet, and she will probably never
be able to throw away her medicines or party like a teenager.
But she has taken control of her life, stabilized her condition,
improved her general health, and become a positive, lively person,
a joy to be around; no small accomplishment for a woman in her
situation.
Getting well, or overcoming illness, doesn't necessarily mean
cure; it doesn't mean living forever. It doesn't mean a list of
dos and don'ts, pills to take and foods to avoid. It means improving
our condition and gradually making our lives happier, healthier,
more fulfilling. How much our health improves depends on the severity
of our illness, the conditions of our lives, and the internal
and external resources we can bring to bear. How much better we
feel, depends mostly on us.
What's in it for me?
Unlike some other self-care books, this one doesn't say we make
ourselves sick or think ourselves well. It doesn't say, "take
control of your life," while glossing over the difficulties
involved. It doesn't even say, "Follow your doctor's orders."
Instead, it gives a practical, five step program for recovery:
- Slow down. Save some energy for our bodies and lives,
instead of giving every last ounce to work, worry, other demands,
or entertainment.
- Make a change. Change something in our lives that
damages us. No matter how small, any successful change builds
our self-confidence and makes the next change easier.
- Get help. We can't do it alone; life is a cooperative
effort. Learn to find and ask for help.
- Value our bodies and our lives. Listen to our bodies
and treat them with respect. Fill our lives with more pleasure,
love, and reasons to live.
- Grow up. Educate ourselves, take responsibility, be
assertive. Accept ourselves the way we are, but don't give up
on getting better.
These steps would sound intimidating, even to me, except for
three things. First, we rarely need the whole program. Anything
we do for ourselves is likely to pay dividends. Second, every
single step should feel good; the whole idea, supported by scientific
studies, is that improving quality of life will improve our health.
Third, you're probably doing many things right already.
So it's not as hard as it sounds. In these pages, we will meet
people who have carried this program out, over years, one step
at a time. They have overcome AIDS, heart disease, arthritis,
chronic fatigue, lupus, fibromyalgia, asthma, cancer, and other
conditions, including, in my case, multiple sclerosis. These are
people I have nursed, interviewed or coached, not an elite group,
but people with problems like those we all have. If they can do
it, you can, too.
I am not promising any picnic or any miracles, though picnics
are good for you, and miracles happen all the time. Overcoming
chronic conditions is a challenge; it calls for all our intelligence,
courage, and creativity, and all the help we can get. Barriers
will block our way, and sometimes we won't even know they're there,
just that we're stuck. This book will help identify and overcome
them. With effort, time, and a few breaks, we may find the journey
of recovery leading us to better lives, and better health than
we had ever thought possible.
Not our fault
Before planning how to get well, it may help to consider the
various reasons we get sick, only a few of which are under our
control. Sometimes our genes are programmed for susceptibility
to one or another awful disease. Some environments subject us
to toxic chemicals, natural or man-made, while others are full
of hostile organisms. Some of us live amid violence, without ever
knowing physical safety, or in crazy families who deprive us of
emotional security and self-respect. We may lack sufficiently
healthy food or water. We may grow up without opportunities for
exercise, fresh air, education, relaxation, or love.
Studies of stressful life events - job loss, divorce, relocation,
death of a family member etc. - consistently show higher rates
of all types of disease following such stressors. To these, we
add all our maladaptive responses to life's insults: bad posture,
attitudes, or diets, unacknowledged emotions, lack of exercise,
overwork, hurry, various forms of self-abuse and addiction. All
of these injurious behaviors were learned somewhere or adopted
before we knew better, for reasons that were necessary, or at
least seemed like good ideas at the time.
Most diseases, then, except for overwhelming infections or pure
genetic defects, arise from numbers of factors stretching back
through our lives and heredity, and outward through all our social
and environmental influences, a web of causation that we can never
completely sort out. For various reasons, our bodies (and minds)
do not get their needs met, and they react by getting sick. Our
bodies weren't made to last forever, and years of wear and tear
eventually cause breakdowns.
Therefore, it makes no sense to blame ourselves for illness,
to feel guilty about things we could not control. Guilt doesn't
do anyone any good. Far worse than guilt, though, is helplessness,
the feeling that turns us into victims without hope of salvation.
Research shows that people with high "self-efficacy"
(belief we can do the things we set out to do) and "internal
locus of control" (believing we control much of what happens
to us,) have fewer complications, less distress, and slower progression
of illness than those who feel less powerful. Although we often
don't know how much, if any, influence we actually have, we're
better off acting as though we do. As we'll see in Chapter 6,
we often have more control than we realize.
Fight back with self-care
Though it's not a universal reaction, we have a right to grieve,
a right to be angry, and often a little scared, about health problems.
The question is: what do we do with those feelings? This book
says when life makes us sick; we can fight back with self-care.
Use anger as motivation to change harmful life situations (like
a stressful job or a family that smokes despite our lung disease.)
Employ fear of future complications as a reason to change unhealthy
behaviors and attitudes. Allow sadness to extend into feelings
of compassion, and even love, for our bodies and our whole selves,
who struggle with so much difficulty.
Chronic conditions are not our fault, but no one else will fix
them for us, nor can they. Only we can take care of ourselves.
We can't change our genes or our age, but everything else is up
for grabs. We can even delay or modify the expression of our bad
genes in many cases.
The same dynamic applies, whether we have arthritis, herpes,
hepatitis, depression, or any other health problem. The disease
is there; it has genetic, historical, or environmental causes.
Our response to it, though, makes a huge difference in how much
we suffer and how likely we are to get well. Even in conditions
labeled "chronic," or "progressive," we can
often slow, stop, or reverse the rate of progression or recurrence,
and the severity of symptoms, by measures such as the ones described
in this book.
Health reflects life
Annoying fact: the better our lives, the better our health is
likely to be. Studies show life is unfair in this way. Among these
findings: low job satisfaction is the number one predictor for
future heart attacks. Socioeconomic standing - income, educational
level, power - predicts general health better than any other single
factor, except age.
It gets worse. College students who remembered loving relationships
with their parents have been found, 30 years later, to have far
less illness than those whose parental relationships were more
strained. Those who believe their spouses love them, live longer.
People with more friends are healthier. Laughter and happiness
make the immune system work better. Sex is good for you; fun is
good for you. People who report lower stress levels have lower
blood pressures and stronger hearts.
It is almost as if our bodies know how we feel about our lives,
as if our immune systems and all our other miraculous self-healing
mechanisms get discouraged when we do, feel hopelessness, grief
and stress when we do. It's not just that happy people exercise
more or eat better - though they tend to. "Mind/body"
research demonstrates that our bodies, especially our unconscious
self-care systems (such as the immune system,) react to our life
situations as strongly as do our conscious selves.
The immune system's sensitivity to life conditions has been proven
beyond reasonable doubt. A 1977 Australian study, often replicated,
found that T-lymphocytes (a type of white blood cell) were less
active in people whose spouses had recently died. When they took
those lymphocytes and put them in a test tube with a protein they
would normally attack, the bereaved cells made only a halfhearted
attempt to fight. It was like those cells were saying, "What's
the use? Without [the deceased spouse,] it's just not worth it."
Of course, blood cells do not "think" in this sense,
but the result is the same. The wounds of recently bereaved people
also heal more slowly than those of others. In a number of studies,
students with fewer friends, or more stress, have shown decreased
immune responses.
Studies of heart patients have found severity of blocked arteries
and frequency of heart attacks varies greatly with a number of
life situations, including quality of marriage, satisfaction at
work, number of friends, even owning a good dog. I am certain
that other body systems will be found responsive to life conditions,
as soon as someone looks. If nothing else, every organ from the
skin to the bowels reacts negatively to too much stress.
Science is telling us that we cannot separate our health from
our lives. Stress, loss, isolation, economic insecurity, and other
hardships tend to make us sick. Self-confidence, love, happiness,
and relaxation are examples of conditions that help us heal. Therefore,
getting well is largely a question of improving our quality of
life.
My ticket out of here
Sometimes sickness is a logical answer to life's pressures, a
syndrome I call, "Illness is my one and only ticket out of
here." When demands become overwhelming, when our lives become
too tense, too stressful, too painful or crazy, and when we lack
the ability or willingness to change them, our bodies may escape
by getting sick, or even dying.
We can see this in some children diagnosed as "failure to
thrive." Kids who are neglected or abused sometimes stop
growing. Their glands simply stop producing growth hormones. Often,
when these children go to hospitals or foster homes, the hormones
kick in, and they start growing again. But when they are sent
back to the place where they've been neglected, even if they get
adequate food and shelter, they may once again shut down their
growth process. Obviously, this is not done consciously; it is
the body's response to intolerable conditions.
Similar things happen to adults. My former nurse manager, Margaret
Washington, had terrible high blood pressure, what doctors call
"malignant hypertension." She took three medicines,
and still frequently ran numbers like 230/120, which would justify
an emergency room visit for you or me. At 55 years old, she was
somewhat overweight and underexercised, but not nearly enough
to account for her life-threatening pressure readings.
Margaret had worked her way up from the bottom, all the way from
a nurses' aide to a manager with a Master's degree, while raising
children and later, grandchildren. In spite of her accomplishments,
she never felt respected or safe among our administration. As
virtually the only African-American in nursing leadership, she
felt scrutinized and judged. Whether or not this feeling was accurate,
it left her constantly anxious. She tried to work harder than
everyone else, worried all the time, and took great pains not
to offend or upset anyone in management. Because of her family's
financial needs, she was not willing to resign. She was on her
way to a stroke, heart attack, or kidney failure, and it looked
like a short trip.
What saved Margaret was a twisted blessing. To cut expenses,
the company laid her off with a decent retirement package. Within
four days, her pressure was on its way down. It continued dropping
for the next three months, and currently she is on only one medication,
and has a normal blood pressure. She took a part time job, teaching
parenting skills to young single mothers, which she had long wanted
to do.
Was the job making Margaret sick, was it her genes, or was she
making herself sick? I would call it a combination, but one thing
is clear: if she hadn't gotten out of there in one piece, she
would have gotten out crippled, or in a coffin.
The Activity/Pain Cycle
Margaret was living the fatal version of what chronic pain specialists
call the activity/pain cycle. People with chronic pain often work
and push themselves until pain makes them stop. Then they'll rest
for the minimum possible time, and try to resume working, until
pain stops them again. Chronic pain is so exhausting that, by
then, they're usually through for the day.
When I heard about the activity/pain cycle, I thought, "This
isn't just pain; it applies to every symptom and illness in life."
Illness protects us by allowing us to stop beating our head against
the wall, to take a break from endless demands and stress. Since
our bodies desperately need us to stop, we aren't likely to get
well, unless we find some other way to protect ourselves. Illness
can often be seen, then, as the body screaming for help.
One treatment goal in chronic pain is to move people to an activity/rest
cycle, where we follow our bodies' rhythms and stop before pain
builds up. On the activity/rest cycle, people wind up doing more
and suffering less. Most find it very hard to make this particular
change, though. Our society essentially lives a mass version of
the activity/pain cycle, where it's not okay to stop until we
break down. It's not okay to ask for help until we are disabled,
and not okay to take a day off without a doctor's certificate.
Doctors call taking advantage of illness to get some relief from
the struggles of life, "secondary gains." These gains
can include more rest, attention from family and health care providers,
sympathy, escape from intolerable stresses, and medications that
numb physical and psychic pain. Going for these "gains"
doesn't make us lazy or crazy. It doesn't mean we're making ourselves
sick - life takes care of that - but it may explain why we find
it hard to get well. On the activity/pain cycle, illness can be
"healthier," in many ways, than health.
There is a better way, though. We can change the aspects of life
that damage us and adapt to, or escape the things we cannot change.
When we are being abused at work, home or in between, or when
we abuse ourselves, our bodies tend to get sick. When we change
those situations, attitudes or behaviors, we'll feel better, our
immune and self-repair systems will work better, and usually,
our health will get better, although how much better varies widely.
It won't happen all at once, but we can get out of the activity/sickness
horror show.
My Starting Point
This book is full of great stories meant to inspire or instruct
in some way. They can wait, though. It starts with my own, not
very inspirational experience, because that is the source of the
book. Twelve years ago, I was diagnosed with multiple sclerosis
(MS), after ten years of unexplained symptoms. Before my diagnosis,
I ran around like a headless chicken, and not just any chicken.
I was Super Headless Chicken, committed to raising two children,
splitting housework with my wife, Aisha, working as a nurse, improving
my neighborhood, saving the environment, developing a songwriting
career, and some more goals I can't remember now. With such divided
loyalties, I naturally did a rather poor job at all of them.
In 1989, I developed extreme weakness in my right leg, then loss
of vision in both eyes. At first, I tried to tough it out, because
I didn't want to change. It took me five years, and two more MS
attacks to accept my new reality and start paying attention to
my body, but finally, I got with the self-care program. First,
I rested; I listened to relaxation and guided imagery tapes that
helped me hear what my body needed. Its message was pretty simple:
Do one thing at a time. Get help. Breathe. You can go a long way
with those three instructions, and gradually I learned to get
moving again, according to my body's rhythms.
I made changes, starting with exercise, a gentle form of yoga,
which I now do twice a day, and gradually adding swimming and
weightlifting. I cut back to part-time work and started meditating
daily. (Fortunately, my family supported me through these changes.)
I got help from doctors. I never used the high-tech injectables
that slow the progression in some cases of MS. They weren't approved
for my type of MS, and I felt the costs, side effects and hassle
outweighed the modest benefits claimed by manufacturers. My neurologist
has supported these decisions, even while prescribing those meds
for other patients who wanted them. I take one medication to control
symptoms, along with supplements and an over the counter medicine
(aspirin) that makes sense to me. At various times, I have pursued
alternative treatments and used other self-care techniques, as
I'll describe later.
As the years pass, so far, my MS has progressed but slowly, perhaps
because my life is getting better. I have new symptoms, but also
new abilities and strengths. I am probably in my best shape ever
- admittedly, that isn't saying much - and my days are so full
of love and happiness, it's disgusting (at least, most days.)
I have learned to forgive others and myself, to accept what life
gives, to be more open with people but stand up for myself, even
if I sometimes have to do it sitting down. I sincerely believe
that my self-care program has contributed to the relative stability
of my MS, and that my response to MS has improved the quality
of my life. I know how lucky I am to be able to say that.
A nursing perspective
My 25 years as a nurse helped me make sense of my situation and
find ways forward. In nursing, we're grounded in the scientific
approach of medicine, but trained to see that people's health
cannot be separated from the entirety of their lives. This book
largely reflects a nursing view, one that gives full importance
to genetics and biochemistry, but also to the practical, emotional
and spiritual dimensions of individual lives, and the interactions
between all of these factors.
In my work as a nurse and health coach, I spend time with hundreds
of people with a variety of health conditions. I got the idea
for the book when I realized that most of them, at all levels
of health, weren't doing nearly as well as they could. Not only
my patients, but my coworkers were living with pain and unhappiness,
and often seemed too worn down, angry, careless, or hopeless to
take care of themselves.
I wondered how I had come to be one of the most productive and
positive people on the job, because I had distinct memories of
being miserable much of my adult life. What had changed? Was I
doing something right, or was I just lucky? What factors kept
my associates and patients from taking better care of themselves?
Searching for answers led me to the interviews, studies and stories
that make up the body of this book.
Cost/benefit analysis
My research and experience with self-care often came back to
issues of motivation. While the medical profession attributes
unhealthy behavior to our not knowing what's good for us, ignorance
is only a small part of the problem. The behaviors of the most
knowledgeable groups, doctors and nurses, are no better than those
of others with comparable incomes. In reality, the decision to
engage, or not to engage, in self-care usually results from a
rational, though subconscious, cost/benefit analysis. Like any
change, getting well involves time, effort, and courage; we won't
attempt it if the benefits are too meager or the costs too high.
Wouldn't relief of pain, avoidance of complications, better function,
and longer life be sufficient motivation? It's not that simple.
Our lives, and our roles in them, have their pluses and minuses,
pleasure and suffering, joys and grief. Too little of the good
things and too much of the bad can sharply lower our estimate
of the value of wellness.
Pain also has its hidden upside. Many of us may believe we somehow
deserve our pain, may let physical pain distract us from emotional
pain, or may find in pain (or fatigue) our only way to take a
break from constant work, or to accept help. Even "feeling
better" brings conflict if part of us believes we deserve
to suffer, if feeling bad gets us positive attention, or if the
effort involved in feeling better seems too frightening.
The things that raise the costs and lower the perceived benefits
of getting well are barriers to self-care. They are often the
same aspects of life that contributed to our illness in the first
place. We didn't cause them, usually, but with a little help,
we can solve these problems and start getting better.
Barriers to self-care
First, we need reasons to live and work at getting well. Some
of us live in circumstances that make life difficult, and positive
experiences hard to come by. If I dread getting up and going to
work, and dread coming home to an angry household, why should
I care about getting well? If I am lonely, tense, in pain, with
little pleasure, purpose or security, or under constant stress,
why should I exercise, stop smoking, or stop taking heroin, for
that matter? So I can live a few years longer? Why would I want
to?
Reasons to live are plentiful, however, and most of them are
cheap. People keep going for an incredible variety of motives,
some of them fascinating, mostly covered in Chapter 5.
Some believe life may be worth living, but they, themselves,
are not. Low self-esteem, not valuing ourselves, inhibits self-care.
Many of us don't believe we can give ourselves the time and energy
required to maintain our health. Everyone else's needs are more
important than ours, and we don't feel we have permission to be
well. We deal with getting such permission in Chapter 6.
Loss of Hope
Another de-motivator is absence of hope. Why try to get well
if it won't do any good? (As in, "You have less than a year
to live," "You'll never walk/run/play the xylophone
again," or, "Your condition is chronic and progressive.
You can't get better.") Hopelessness also comes from miserable
social or economic situations: "I'll never find someone to
love/a place to live/a good job." It's a killer, leading
to complications, suffering, and earlier death. Professionals
who take away clients' sense of hope are guilty of malpractice.
Lack of self-confidence also deprives us of hope. We may not
believe in our ability to do what we set out to do ("low
self-efficacy.") Or we may not believe that self-care will
do any good. This book gives exercises for building self-efficacy,
information supporting our power to help ourselves, and inspiring
stories of people who have succeeded.
Resistance to Change
Fear of change raises the perceived costs of self-care. The one
absolute requirement for overcoming illness is a willingness to
change - if you're sick, being well is a change - but change is
scary and difficult for many of us. In addition to the discomfort
of changing behavior, attitude, or life situations, we may fear
giving up secondary gains, or fear the conflict change can bring.
We may have good reasons for cherishing self-damaging habits and
not want to let them go. Building our capacity for change is covered
in Chapter 3.
Unloving our bodies
Our attitude towards our bodies affects how we see the costs
and benefits of getting well. Do we enjoy and appreciate our bodies?
Listen to them? Love them? If we do, we'll be much more likely
to put some effort into them. If we, like most of society, regard
them as machines or beasts of burden, as ugly or deficient in
some way, we'll probably let them fall apart. Learning to love
our bodies is taught in Chapter 7.
Lack of support
Even when our motivation for wellness is high, there are a host
of potential barriers. Sometimes our disease moves too fast; we
can barely keep from sinking in a tide of painful change, much
less think about getting well. Fortunately, such virulent conditions
are rare, but if you have one, this book may not be right for
you. A more common barrier is lack of support: too many demands
and not enough help. Ways of slowing down and easing demands are
given in Chapter 2.
Too many of us are isolated, left stranded in our highly mobile
society, with few friends, strangers to our neighbors. Some are
emotionally and physically distant from our families; some, many
foster children, for example, never had a chance to connect with
them. Others don't know how to ask for available help, or are
afraid to ask. Chapter 4 covers finding, requesting, and accepting
support.
Looking up at the white coats
Getting well, like dealing with other life problems, is extremely
hard for people with little education, especially for those on
society's bottom rungs. Recovery requires taking some control
of our lives and our care. That's a tough assignment when you
have never had power over much of anything. We may have to speak
up to doctors and other professionals, and demand respect where
little is sometimes given. This situation can be stressful enough
to keep some of us from seeking help at all. Self-care requires
informing ourselves, a difficult task for poor readers, and for
those who have been raised not to ask questions. Help in dealing
with such situations is given in Chapter 6.
Socioeconomic factors, for many of us, cause more difficulty
than the disease symptoms themselves. We have to find ways to
pay for treatment, keep a roof over our heads, care for our families
if we have them. We may have to weigh time and money spent in
self-care against other crucial needs, or simply lack convenient
access to resources that could help us. We may not find care providers
familiar with our culture or language.
Some of us grew up with abusive or dysfunctional parents or caregivers
who left us unloved and fearful. Others suffer from psychological
problems - depression, anxiety, or worse - which make getting
well appear a decidedly mixed blessing. Some of us have no role
models; we've never known people who take care of themselves,
so we never learned how. Such socioeconomic and psychological
factors may limit, though not eliminate, self-care options.
So I don't want to hear about any of you criticizing a person
with illness for not being more positive. Asking, "why haven't
you gone back to school?" or "why are you still depressed?"
If I hear of any of you doing that, I'll come over and go upside
your head with my cane. Those of us who start from harder places
may have less ambitious criteria for success. Even so, such barriers
can be overcome! Given support, hope, reasons to live and a willingness
to change, there are ways forward for almost everyone.
The riddle of compliance
Hardly anyone decides consciously to stay sick, to keep suffering.
We "forget" to take our medicines. We are "too
tired," to exercise or "too busy" to relax. We
"don't get around" to writing in a journal or having
that heart-to-heart discussion with our spouse about our needs.
We suddenly find ourselves "craving" some food or activity
we know is bad for us. We "just don't feel like" taking
our blood pressure or doing our stretches today.
These acts of apparent self-sabotage tell us we've come up against
a barrier to self-care. We may be thinking self-blocking thoughts
(such as "People won't like me if I take time for myself.")
We may have practical difficulties: the roof may be leaking, the
car in the shop, our mean-tempered aunt moving in with us. We
may be lonely, stressed, even overwhelmed. The shame placed on
people in these conflicted situations is unwarranted; they are
part of the life difficulties that contribute to most cases of
chronic illness.
We may have other perfectly valid reasons for "noncompliance",
as doctors call it when we don't follow their orders. Therapy
may be too expensive, have bad side effects, be ineffective or
dangerous, be too disruptive of our lives, or conflict with our
values. We may also have negative reasons: rebellion against authority
or unwillingness to accept that we have a problem. When faced
with noncompliant patients, care providers should explore these
possibilities. This book explores solutions to them.
Health care workers who try to force healthy behavior on us out
of fear often do more harm than good. Catherine Feste, author
of The Physician Within, developed diabetes forty years
ago, at age 10, when that diagnosis usually meant a short and
miserable life. She says, "I can't imagine taking the prevention
approach. I can't see myself getting out of bed in the morning,
stretching, and saying, "Well, another day to prevent blindness
and kidney failure! As if that were a reason to live!" Feste
has thrived with her diabetes, she believes, because she has found
meaningful and enjoyable things to do with her life, not because
of fear of the consequences of failure. Each of us has the ability
to follow her inspiring model. We just need to learn ways over
the barriers.
Why we need doctors
Self-care doesn't mean rejecting medicine. Working effectively
with health professionals (Chapters 4, 6 and 10) can make all
the difference in getting well. This book is no substitute for
medical care, or for educating ourselves about our particular
condition. I'm not saying this to avoid getting sued; medical
treatment helps in most conditions, and it's getting more helpful
all the time. Good doctors or nurses will share with us what they
know. Medical tests can help us understand what is happening and
monitor our progress. We nearly always need doctors, and often
one or several other healers, on our health care team.
However, I know of no chronic condition where medical care can
effect a cure all by itself, or where the doctor's contribution
is more important than the patient's. Too often, expensive and
invasive treatments of dubious value distract us from self-care
measures that could be much more helpful. Coronary artery bypass
surgery frequently falls into this category, if it takes the place
of relaxation, exercise, healthy eating and social support (the
program developed by Dean Ornish.) So does indiscriminate use
of antidepressants, if they take the place of exercise, positive
self-talk and counseling. In some conditions like fibromyalgia,
irritable bowel syndrome, chronic fatigue, and some autoimmune
conditions, where causes and treatment are poorly understood,
the search for currently nonexistent medical answers can delay
self-care measures more likely to improve our situation.
Overcoming illness means cooperation with doctors, not attacking
them. Most are overworked and underappreciated, and will welcome
sharing responsibility with their patients. (If they don't, we
can find others.) "Self-management" programs have been
shown to reduce doctor visits, hospitalizations and medication
use, saving resources better used elsewhere. We don't do our doctors
any favors by giving them too much power. They cannot heal us
without our participation. Self-care is a winning proposition
for everyone involved.
Recovery, yes. Cure, maybe.
This book applies a recovery model to getting well. Like a 12-step
program, it promises a lifelong strategy for living well, not
a cure. I still have MS; Cindy Wong still has hypertension and
thyroid problems, Bob Lawrence, quoted at the top, still has AIDS.
I can guarantee that if you follow all the advice this book gives,
and your doctor gives, and read 20 self-help books, you will still
die, eventually.
What counts, though, is what we do with the time we have, and
the knowledge in this book can empower anyone to live a richer,
healthier life, to take better care of themselves and work better
with others. These skills sometimes lead to cure, more often not,
but whatever our condition, we can always feel better, more well,
more fully alive. We may also wind up as more fulfilled people
who tend to bring happiness and inspiration to those we meet,
or at least to annoy them by being so cheerful.
Doctors have long known that an arthritic person's level of pain
and disability has almost no correlation with the amount of joint
damage visible on X-ray. Neurologists have found that MS patients'
symptoms bear little relation to the scars seen in their brains
on an MRI. The whole person is much more than the disease.
Doctors and educators at Stanford developed a program, the "Chronic
Disease Self-Management Program," which Kaiser Permanente
now presents as "Healthier Living" (HL.) This program,
which I sometimes facilitate, aims to help people manage their
own conditions and lives. The results, proven repeatedly, include
higher self-rated health, less disability, less limitation on
social and role activities, increased energy, fewer doctor visits
and hospitalizations, and less distress. Yet, participants' conditions
have usually not changed much clinically.
How to use this book
Each chapter of this book presents knowledge to help with specific
areas of self-care. No one needs all of it, so feel free to jump
around to what seems most relevant to you. You may even want to
go straight to Chapter 9, and work on a personal self-care plan.
Self-help exercises and resources for material covered in each
chapter have been placed in their own sections at the back. You
may want to read the book through once - it goes pretty fast -
then go back to the parts that seem right for you, and try the
related exercises.
"The Art of Getting Well," reflects the work and lives
of hundreds of people who try to live fully and make this world
a better place. I hope you find within these pages the help, information,
inspiration, or at least the entertainment value you are looking
for.
The
Art of Getting Well:
A Five-Step Plan for Maximizing Health When You Have a Chronic
Illness
by
David Spero R.N.
Paperback
$ 15.95 ISBN 0-89793-356-7
Hard
Cover $ 25.95 ISBN 0-89793-357-5
256
pp 7-1/4 x 9-1/4
February 2002
Order
now from: Amazon.com
or Hunter
House
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