Rx: How to Live Well with Chronic Disease

This article was adapted from The Healthy Mind, Healthy Body Handbook by David S. Sobel and Robert Ornstein. Publisher: DRx, Los Altos, CA, 1996. May not be reproduced without written permission.

Same Disease, Different Response


Arthur suffers from severe arthritis. He is in pain most of the time and can’t sleep. He took early retirement because of his arthritis and now, only 55, he spends his day sitting at home bored. He avoids most physical activity because of the pain, weakness, and shortness of breath. He has become very irritable. Most people, including his family, don’t enjoy his company anymore. It even seems too much trouble when the grandchildren he adored come to visit.

Isabel, age 66, also has severe arthritis. Every day she walks several blocks to the library or the park. She works two days a week as a volunteer at a local hospital. When her pain is severe, she practices her relaxation technique and tries to distract herself. She also loves going to see her young grandchildren and even manages to take care of them for a while when her daughter is out. Her husband is amazed by how much zest she has for life.

The difference between Arthur and Isabel is one of attitude. Attitude
cannot cure a chronic illness. But cultivating a positive outlook and
learning self-management skills can make it much easier to live with.
The more confident and determined you feel, the more you will be able
to maximize your health. Whether you have arthritis, diabetes, heart
disease, cancer, lung disease, multiple sclerosis, or a combination of
chronic conditions, you can learn to be more active, cope better and
be more in control.

To live well with chronic conditions you need to learn skills for managing three areas:

• Your illness and symptoms
  
• Your normal daily activities
  
• Your emotions
  

Managing Your Illness


Any illness is a learning experience. You may not even know you have a pancreas gland until you’re told you have diabetes. To manage a chronic illness, you need to become an expert in your disease. This doesn’t mean you become a doctor, but you need to learn enough about your condition and how your body reacts so you can take action to minimize disability and complications.

Be an Active Partner


Learn about your medical condition. What makes it worse or better? What action plan should you take if symptoms flare? What are the warning signs that you should get professional medical help? What can you expect from medical care and what must you do for yourself?

There may be specific skills you need to learn: how to measure your blood sugar if you are diabetic, how to properly use an inhaler if you have asthma, how to exercise safely with a heart or lung condition, how to use assistive devices if your have arthritis.

Learn how to prepare for a medical visit – what questions to ask about medical tests, medications, and surgery.

Find community resources:

• Check out the Yellow Pages of the telephone book. Look under “Health,” “Hospitals,” “Community,” “Social Service Organizations,” “Local Government, Information and Referral.”
  
• Call the national or local chapters of voluntary agencies such as the American Heart Association, American Cancer Society, or
  National Arthritis Foundation.
  
• Ask the reference librarian in your local library to help you find information.
  
• Check out the calendar of events in your local newspaper.
  

Learn to Cope with Symptoms


Most chronic disease symptoms wax and wane. When symptoms are bad, take some consolation in knowing that “this will pass.” Learn and practice the proven techniques for dealing with pain, tension, depression, anxiety and insomnia.

Managing Daily Activities


Life doesn’t end if you have chronic illness. There are still chores to do, jobs to perform, and relationships to maintain. Things you once took for granted can become much more complicated, but you can learn new skills to maintain your daily activities and continue to enjoy life.

Break the Cycle


Chronic disease often brings fatigue, pain, shortness of breath or other symptoms that support a “vicious cycle” of physical inactivity. You can’t sleep and your energy drops. You become weak and deconditioned. Deconditioning leads to feeling helpless, which in turn discourages physical activity. And so on.
The solution is to break the cycle with gentle, gradual physical activity. As your physical activity increases, your strength and stamina grow, your mood improves, and soon you’ll be carrying out your normal daily activities.

One Step at a Time


When living with chronic disease, it’s easy to focus on limitations and disabilities rather than potential. The tendency is to overemphasize the risk of exertion. There are safe limits within which people with chronic disease can live a vital and fulfilling life.

Identify a specific action you would like to take. Break it down into small steps. If you want to walk a mile to the park, start by walking a block. Each successful step brings satisfaction, boosts your mood and enhances your confidence.

Managing Your Emotions


When you are diagnosed with a chronic illness, your life changes. The future looks different. Your familiar routine is altered. Life plans may be thwarted. The resulting emotional shift can magnify your symptoms and disabilities. Watch for the following common feelings:

Anger: “Why me – it’s not fair. I am frustrated that I can’t do what I used to do.”

Anxiety: “I’m afraid of what might happen to me. The future is so uncertain.”

Depression: “I can’t do anything anymore. What’s the use of trying.”

Isolation: “No one understands. No one wants to be around someone who is sick.”

Learn the skills to manage these negative, limiting emotions.

Explore Your Feelings


Learning you have a disabling chronic disease can be a profound shock to your sense of self. It changes your perceptions of who you are, who you were and who you will become. Suddenly you discover that you are not invulnerable after all. “These things” don’t always happen to other people. These traumatic feelings can hit hard so give yourself the time and space to come to terms with them. Like bereavement, chronic illness can bring with it powerful feelings of loss: loss of aspirations, plans, or physical abilities.

People often go through various stages of feelings when diagnosed; Denial: Denying or not believing the diagnosis; Anger about being ill and blaming others; Bargaining or guilt: Attempts to reverse the diagnosis by offering something in exchange; “I’ll give up smoking if you’ll take away the disease.”
Depression: Feelings of helplessness and loss of control; Acceptance: “I don’t like being sick, but I can live with it.”

These stages are all normal responses. Express your feelings. Pent-up anger or unvoiced sadness can undermine important efforts to manage your illness. Take time to learn the proven skills for managing angry feelings and depression.

Watch Your Self-Talk


The explanations you give yourself about your symptoms and disease can strongly influence your mood and ability to function. Many limitations and restrictions associated with chronic illness lie more in our beliefs than in our bodies.

Your expectations can become self-fulfilling prophesies. If you think heart disease means that you’ll never be able to work, have sex, or see your child graduate, then your actions and feelings are likely to reflect these beliefs. Learn to “eavesdrop” on your internal dialogue. Challenge and rewrite restrictive, inaccurate, negative self-talk.

Don’t Do It Alone


One of the side effects of chronic illness is a feeling of isolation. As supportive as friends and family members may be, they often cannot understand what you are experiencing as you struggle to cope with a chronic illness. There are others who know first- hand what it is like to live with a chronic condition just like yours. Connecting with these people can:

• Reduce your sense of isolation
  
• Help you understand what to expect
  
• Offer practical tips on how to manage symptoms and feelings on a day-to-day basis
  
• Give you the opportunity to help others cope with their illness
  
• Help you appreciate your assets and realize that things could be worse
  
• Inspire you to take a more active role in managing your illness by seeing others coping successfully.
  

Support can take many forms. You can read a book or newsletter about how someone lived with a chronic illness. Join a support group. Talk with others on the telephone or participate in an online chat session. Whatever means you use to connect, be sure to practice clear communication skills to express your feelings and wishes.

You’re More Than Your Disease


It’s very tempting for chronic disease sufferers to identify with the disease. Remind yourself that you are more than your disease – more than a “heart patient” or “lung patient.” And life is more than just trips to the doctor and managing symptoms.

Cultivate areas of your life that you enjoy. Small daily pleasures can help balance uncomfortable symptoms or emotions. Experience nature; grow a plant or watch a sunset. Indulge in the pleasure of human touch. Enjoy a tasty meal or celebrate companionship with family or friends. Such special moments of pleasure are vital to chronic disease self-
management. Focus on your abilities and assets rather than disabilities and deficits. Celebrate small improvements. If chronic illness teaches anything, it is to live each moment more fully. Within the true limits of whatever disease you have, there are ways to enhance your function, sense of control and enjoyment of life.

Illness Can Be an Opportunity


Even with its pain and disability, an illness – like any crisis – can enrich our lives. We may be forced to reevaluate what is really important, shift priorities and move in exciting new directions that we might never have seen before.

Jill has breast cancer. Since her diagnosis she has lived more fully than ever before. “I was lost and aimless after my children grew up and left home. One of the first things I did after the diagnosis was learn to swim with my head in the water. I had always kept it above the water, too scared to put my whole self in. That had been the story of my life. Now I do whatever I want. I don’t think about how much time there is, just what I want to do with mine. I feel less afraid of living.”

Heart attack often provides the motivation for people to slow down and enjoy life. Deepening relationships with family and friends becomes a first priority.

A chronic disease that restricts movement may lead some to think again about unused intellectual talents: Meg learned a new language and found a pan pal; Fred finally wrote his novel. Chronic illness may close some doors and open new ones.

Plan for the Future


Living well with chronic illness sometimes involves preparing for death. Death is feared, welcomed, accepted or, all too often, pushed away. Fear of death is a fear of the unknown; facing the fear can intensify living.

The most useful way to come to terms with your death is to take positive steps to prepare for it. Here are some suggestions:

• Talk openly about your feelings about death to the people around you. Most family and close friends are reluctant to initiate such a conversation but appreciate it if you bring it up.
  
• Take care of unfinished business. Mend relationships. Say what needs to be said to those who need to hear it. Don’t leave words of love, forgiveness, and thanks unspoken. Forgive others and yourself.
  
• Put your affairs in order. Make a will. Get your financial records organized. Make arrangements, or at least plans for your funeral.
  
• Make your wishes known. Let others know how and where you would want to be during your last days, when you want life-support procedures to be stopped.
  
• Write out a Durable Power of Attorney for Health Care, which documents your wishes and designates someone to make decisions for you when you cannot. Discuss these wishes with your family and physician.
  

Having a chronic illness doesn’t have to close down your options. You can still participate actively in life, learn new and interesting skills, make a contribution, and have a rich and satisfying life.

For More Information:


Dollinger, Malin; Rosenbaum, Ernest H.; Cable, Greg: Everyone’s Guide to Cancer Therapy: How Cancer is Diagnosed, Treated, and Managed Day to Day. Kansas City, MO: Andrews and McMeel, 1991.

Franz, Marion; Etzwiler, Donnell; Ostron-Joynes, Judy; Hollander, Pricilla: Learning to Live Well with Diabetes. Minneapolis, MN: DCI/ChroniMed Publishing, 1991.

Jevne, Ronna Fay and Levitan, Alexander: No time for Nonsense: Getting Well Against the Odds. San Diego, CA: LuraMedia, 1989.

Kane, Jeff: Be Sick Well: A Healthy Approach to Chronic Illness. Oakland, CA: New Harbinger, 1991.

Klein, Robert A. and Landau, Marcia Goodman: Healing the Body Betrayed: A Self-Paced Self-Help Guide to Regaining Psychological Control of Your Chronic Illness. Minneapolis, MN: DCI/ChroniMed Publishing, 1992.

Lerner, Michael: Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. Cambridge, MA: MIT Press, 1994.

Lorig, Kate and Fries, James: The Arthritis Helpbook. Reading, MA: Addison Wesley, 1990.

Lorig, Kate: Holman, Halsted; Sobel, David; Laurent, Diana; Gonzales, Virginia; Minor, Marian: Living a Healthy Life with Chronic Conditions: Self-Management of Heart Disease, Arthritis, Stroke, Diabetes, Asthma, Bronchitis, Emphysema & Others. Palo Alto, CA: Bull Publishing Co., 1994.

Pitzele, Sefra Kobrin: We Are Not Alone: Learning to Live with Chronic Illness. New York: Workman Publishing, 1986. Practical, firsthand advice on how to cope with chronic conditions.

Spiegel, David: Living Beyond Limits: New Hope and Help for Facing Life-Threatening Illness. New York: Times Books, 1993. Guide to confronting the emotional challenges of cancer and other life-threatening conditions.

Time Life Medical: At Time of Diagnosis Video Series. New York: Time Life Medical, 1996. Thirty-minute video tapes and workbooks on over 30 topics including insomnia, hypertension, prostate cancer, thyroid disorders, breast cancer, diabetes, coronary heart disease, and hepatitis.

[sidebar] Research Links Mind and Chronic Illness


Thousands of studies link psychological states and social conditions to the onset, course, and recovery from chronic illness. Even when the underlying physical disease cannot be reversed, positive mental states can change the way people experience symptoms and how disabled they are. Though mental factors are, of course, not the only determinants of who
becomes ill, the accumulation of evidence makes a very strong case that mind does matter. Here are a few examples.

Onset of Disease


Inadequate social support is associated with twice the overall rate of premature death.

An analysis of over 100 studies suggests people who experience chronic anxiety, depression and pessimism, incessant hostility and cynicism, tend to have double the risk of many kinds of diseases including asthma, arthritis, ulcers and heart disease. For example, chronically nervous, tense, anxious people are more likely to have abnormal heart rhythms, and are two to six times more likely than less anxious people to die of a heart attack.

Women younger than 45 who are divorced, separated or widowed have significantly higher levels of total cholesterol and “bad” LDL cholesterol than married women.

Men with high hostility are seven times more likely to die within 25 years from any cause than less hostile men. Reducing anger and hostility appears to reduce the risk of recurrent heart attack, and may even prevent heart disease.

If you are wealthy, well-educated and hold a high-status job, you are less likely to have or die from nearly all chronic illnesses.

Over a seven-year period, older people who believed that they were in “poor” health were nearly three times more likely to die than those who rated their health as “excellent.” These self-ratings more accurately predicted who would die than their doctors’ objective reports.

Health pessimists who thought they were in poor health, despite a clean bill of health from their doctors, had a slightly greater risk of dying than the health optimists. These optimists, who viewed themselves as well even though their doctors’ reports suggested their health was poor, had a slightly less risk of dying.

A long-term study of college graduates found that optimistic men were physically healthier and had less chronic illness in later life than the more pessimistic alumni.

Women with a history of depression have 15% less bone density than nondepressed women of the same age. Bone loss is the critical factor in osteoporosis, the disease marked by thinning of the bones which often leads to crippling fractures.

Course of the Illness


Among patients with arthritis of the knee, depression is a better predictor than x-ray evidence of physical damage of how limitations and discomfort will affect the person.

Group education sessions for patients with arthritis led by other patients reduced pain levels by 20%. They also decreased visits to the doctor by 43%, saving an average of $400 per patient over four years.

Women with advanced metastatic breast cancer who received group psychotherapy and support in addition to standard medical care survived on average more than twice as long as those who received standard care only.

Recovery from Disease


Patients with coronary heart disease who are depressed are more likely to have heart attacks, undergo bypass surgery, and suffer other heart-related problems than heart disease patients who aren’t depressed. In a study of patients who had a heart attack, depression related more closely to future heart problems than the severity of artery damage, high cholesterol levels, or cigarette smoking. In heart attack survivors, depression triples the risk of dying within six months.

[sidebar] Try This


Try keeping a journal of your experience with your chronic illness. Write down exactly how you feel about what has happened to you.

• How did you feel about yourself before the diagnosis?
  
• How do you feel about yourself now?
  
• How do you feel others will react to you?
  
• What is the meaning of the illness to you?
  
• When you replay the diagnosis, what thoughts and feelings come to mind?
  
• Have you known others with this condition and how does that experience shape your hopes and fears about the future?
  

You will come up with very useful information. You’ll find areas you need to work on to build back your self-esteem and sense of control.

Watch Out: You Are Not to Blame

Chronic diseases are caused by a combination of genetic, biological, environmental, and psychological factors.For example, stress alone does not cause most chronic illnesses. Mind matters, but mind cannot always triumph over matter. If you fail to recover, it is not because of lack of right mental attitude.

There are many things you can control that will help you cope with chronic illness. Remember, you are not responsible for causing the disease or failing to cure it, but you are responsible for taking action to manage your illness.

Excerpted with permission from the Quarterly Newsletter, Mind/Body Health Newsletter. For subscription information call 1-(800)-222-4745 or visit the Institute for the Study of Human Knowledge website.