The Art of Getting Well

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

The continuation of an article by a nurse with multiple sclerosis whose book and classes have received rare reviews.

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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 under-exercised, 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.

Continued on page 3.

© 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