Learning to Cope with Chronic Illness

Chronic illness may involve repeated episodes of deterioration in which the patient confronts and adjusts to the losses imposed. Example of these losses can include mobility, balance, sexuality, and cognitive function. After working through the normal response to loss, many people are able to find meaning despite being in a physical condition which, prior to the onset of their illness, they would have deemed intolerable and unacceptable. Such patients handle the burden of chronic illness with amazing fortitude and are able to find meaning and value even when extremely disabled.

Individuals who are able to successfully cope with chronic illness share certain characteristics.

• They generally have good self-esteem and a realistic understanding of their own strengths and weaknesses.
  
• They retain an ability to define personal goals and to find gratification in their accomplishments.
  
• They retain some sense of control over their own destiny--a belief that they can still influence their world, including the course or symptoms of their illness.
  
• They are able to maintain hope.

• a reasonable quality of life,
  
• diminished discomfort,
  
• maintenance of dignity and a sense of self-worth, and
  
• retention and enrichment of our loving relationships.

SUGGESTIONS FOR PATIENTS

• Assume responsibility for your own healthcare. Get as much information from as many sources as you can. Learn enough about your condition so that you know something about its treatment, and what you can and can't do to help yourself. Learn about your medications and recognize the side effects you experience. Try to be as compliant as possible but accept that despite the best of intentions some minor deviations can occur.

• Try to define what you have lost. As you do this, you may be able to develop alternate ways to regain, or achieve, at least some of what you have lost. For example, if you have difficulty with balance, work with your physiotherapist to find a walking aid to help you compensate for the loss of balance.

• Recognize that behavior that is appropriate for acute illness may not be adaptive when one is chronically ill. Avoid being overly passive or dependent on others as you might be with an acute illness.

• Deal with the emotional realities. Chronic illness is unfair. It is sad to lose any amount of freedom, our confidence in our health and future, or our physical abilities. It is natural to weep, feel angry, wonder "why me?" and feel anxiety about an uncertain future. These are painful but normal emotions that generally will fade over time. They may be experienced a number of times, as new symptoms develop, or as the illness deprives us of some valued ability. Most people will, after a period of time, come to terms with their new reality and will not become depressed. If necessary, however, seek help in dealing with these emotions and go forward with your life.

• If chronically ill, monitor your thinking. Try to minimize negative or anxiety-producing thinking. Some chronically ill individuals can develop interpretations of events that are unduly negative or anxiety provoking, such as "I can't do it... It's hopeless... I'm defeated" (depressive thoughts), or "I can't stand it... I never know what's happening... I'm hopeless" (anxiety-producing thoughts). Such automatic thoughts only increase the burden under which we function. Find a balance of coping styles.

• Identify and avoid vicious cycles. For example, chronic fatigue may make a person feel discouraged and being discouraged may contribute to feelings of uselessness. These, in turn, can contribute to a sense of fatigue, which then increases the feelings of being useless and unhappy. This is a classic vicious cycle.

• Try to accept the way things are with you at this moment in time. This does not require an admission that you prefer to be ill, but is simply an acknowledgment of your current situation. With such acceptance comes an ability to plan realistically. Do not electively take on additional burdens or responsibilities without carefully considering the options.

• Be positive. Focus on what you can do rather than on what you can't do. Remember that you are a competent individual with many talents and attributes that are inherently yours and will be yours forever. Allow them to flourish.

SUGGESTIONS FOR SIGNIFICANT OTHERS

• Recognize that you cannot control or be responsible for the behavior of anyone but yourself. Your task is to try to maximize the likelihood that the patient will behave in an adaptive, realistic manner.

• Remember that we don't know anyone else's internal reality. We only know their verbal and nonverbal behaviors. We need to avoid negative self-fulfilling prophesies about the patient. Check your assumptions. Are you sure they can't bathe themselves, do simple housework, go outside for a walk, take a vacation, or hold you close?

• As with the patient, it is important to become an expert on the disease and its treatment. The more you know, the more you can help the patient make the right decisions about his/her care, and the more you can monitor your own expectations.

• An important aspect of living with someone with a chronic illness is understanding and accepting your own limitations. Even the most loving and attentive people need time for themselves, whether it's to rest, to take care of personal needs, or to be pampered. Give yourself permission to continue to live your life.

• Support realistic efforts by the patient to be more independent. Give the person permission to try, even if they fail. Active coping inevitably involves some attempts that don't succeed. However, "errors of commission," which is to say, trying and failing, are much healthier for the chronically ill than "errors of omission," or making no effort at all.

• Try not to inflict guilt, rejection, or frustration onto the patient. The illness imposes considerable frustration on both the patient and their loved ones. Recognize this, and try to deal with it in ways that do not increase it.

• Monitor your own grief. As your loved one experiences losses (of independence, health, future) you will experience some normal bereavement. You, too, are losing something of value and will grieve. Recognize that this is normal and try not to let it unduly influence your relationship with your loved one.

Material for this article was obtained with permission from the authors of an article entitled Coping with Parkinson's Disease: Cheryl H. Waters, M.D., and William G. Crary, Ph.D., University of Southern California, National Parkinson Foundation Clinic, 1510 San Pablo, Suite 615, Los Angeles, CA 90004.