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Being diagnosed with a serious liver illness is among the most significant and stressful events in a person's life. Such a diagnosis creates enormous uncertainty. "Are my symptoms going to get worse?" "What will the treatments be like?" "How will my life change?" "Am I going to die?" "Can I get better?" Often these questions can not be answered definitively, but available information can give patients a better idea of what to expect. This is why information management is such an important part of coping with liver disease.
Not everyone will follow the same pattern. Each individual's unique personality will determine how he or she deals with an illness – and information about the illness – day to day. Patients' needs for information may change over time as they move through different stages of coming to terms with their illness. They may seek or avoid information about their diagnosis, depending on their attitudes and coping strategies.
Patients may find themselves experiencing five broad stages of adjustment to a serious liver illness: denial, anger, bargaining, depression, and acceptance. These stages were originally used by Elisabeth Kübler-Ross in her groundbreaking book, On Death and Dying, to describe the process of coming to terms with a terminal diagnosis; however, they have since proved applicable to patients with chronic liver diseases, or for whom recovery is possible but uncertain.
Denial can take many forms. One person may simply refuse to believe his diagnosis, or engage in activities that physically push his body beyond its new limits. Another person might distance herself from her feelings about the condition by over-intellectualizing. In the initial aftermath of a serious diagnosis, denial can allow patients time to prepare themselves for the reality without becoming overwhelmed. However – as in most situations – denial can quickly outlive its usefulness, preventing people from coping with their emotions and participating in treatment.
The loss of health can provoke anger. With no suitable target for blame, anger can be hard for patients to express. When it is allowed to overwhelm and control daily life, aggressive anger can push away the close friends and family members needed more than ever for support during times of illness. It can also lead to passive resistance to treatment that is detrimental to health. However, when anger is harnessed, its energy can be channeled into positive action.
During bargaining, a person attempts to dispel uncertainty by rationalizing: "If I'm 'good,' or if I do this or that, I'll be okay." Patients may "shop" for every medical treatment available, or for more palatable diagnoses. Bargaining often represents a search for lost health and other aspects of their old, disease-free life. Like anger, bargaining can lead to positive action and active participation in treatment, but unrealistic expectations can set the stage for disappointment.
Depression is a normal reaction to intense stress, especially after liver transplant surgery. This is often the time when emotional defenses are exhausted, and patients fully experience the sadness and pain of their situations. People going through depression may suffer from insomnia, inability to concentrate or experience pleasure, and feelings of hopelessness and anxiety.
There is a difference between the reactive depression commonly experienced after diagnosis of a serious liver disease and clinical depression, which is much more severe. Clinical depression is itself a serious medical illness which can't be willed away; it requires treatment with medication and/or counseling. The symptoms of clinical depression interfere with daily life, sometimes to the point of incapacitation, for long periods of time. Clinically depressed people may have frequent thoughts of death or suicide.
Depression is one of the hardest stages of adjustment, but like all the others, it can also be useful and healthy. It can represent a much-needed opportunity to take a break from being cheerful, brave, and having everything under control. Patients experiencing depression can often work through it with reflection and allowing themselves to express their feelings, as well as improving their diet and exercising as much as they can. Some medications may used to treat liver disease may cause depression as well. For pediatric transplant patients, a doctor may be able to adjust dosages or timing to minimize the effects.
To accept is defined as "to receive or take in, hold or contain." Another definition refers to acceptance as "being done willingly or gladly." Healthy acceptance of a chronic liver disease, however, incorporates an element of defiance or refusal to give in. It is a delicate balance between "containing" the illness within one's self, and allowing the illness to "contain" or overwhelm one's entire life.
People with acute or chronic liver illnesses seek information for a variety of reasons: to understand their diagnosis, to decide on their treatments, and to predict their prognosis. They often supplement the information supplied by their health care providers with their own research. Additional sources include others with the disease, friends and family, social networks, media (e.g. books, Internet), government agencies, and health services and organizations.
Information-seeking is generally considered an adaptive form of coping. It can decrease the level of uncertainty associated with serious illness, and patients may feel more in control by taking an active role in their treatment. A better understanding of the treatment often leads to proactive behaviors like taking prescribed medications on time, which in turn results in better health.
Avoidance is another important component of information management. Finding confusing, contradictory, or discouraging information about their disease can frustrate and depress patients. Some people limit their information to the basics of diagnosis and treatment, and do not want extensive information about their condition during some stages of their illness. To avoid the risk of uncovering information that could threaten their optimism, others enlist the help of friends or family in gathering and filtering information. Before they are diagnosed, many people avoid information that might help them determine the cause of their symptoms.
Especially during stages of denial and depression, pushing away thoughts of liver disease may seem like the best protection against giving up. Steering clear of information that causes distress and challenges feelings of security is normal and sometimes necessary in the short term; however, information-avoiding behavior is associated with poorer health outcomes. It is not clear exactly how avoidance might directly affect disease progression or the effectiveness of treatment. Immune functioning might be hampered by suppression of negative feelings that actually increase and prolong high distress and emotional arousal.
In addition, avoiding information might make patients less likely to comply with treatment, which in turn could lead to worsened disease status. As advances in treatment allow more previously fatal diseases to be treated as chronic conditions requiring long-term treatment regimens, adherence becomes an increasingly important factor in maintaining health.
Individuals often balance information seeking and avoiding behaviors to meet their multiple - sometimes conflicting - needs (e.g. reducing uncertainty, improving or sustaining health, and maintaining hope). As people adjust to the life-changing diagnosis of a serious liver disease, they use different methods of coping.
Researchers continue to explore the relationship between methods of coping and physical health. For people with serious illnesses, their adjustment strategies (including management of information) may promote or impede positive outcomes.
Learn more about Lifestyle Changes after Liver Transplantation.
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