The Art of Getting Well

BY DAVID SPERO, B.S.N., R.N. Reprinted with permission.

David Spero notes that illness is the best teacher, awareness is the best medicine, and self care is the best care.

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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.

© Copyright 2002, David Spero, B.S.N., R.N., from The Art of Getting Well: Maximizing Health and Well-being When You Have a Chronic Illness, reprinted with permission. For more information: Call 415-585-9851 or email David@DavidSperoRN.com