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Lymphedema greatly increases the physical and psychological distress of its victims, who may have already been through the trauma of cancer surgery and/or radiation. Although there is currently no known cure for this condition, it can be managed so that patients can lead normal and productive lives. With the employment of lymphedema therapy programs, education, and medical products, great strides have been made in lymphedema treatment.
An important topic receiving little attention is the psychological effect that lymphedema has on patients. Closely associated with psychological complications are social anxieties. The patient not only faces a serious, progressive, life-long disease that requires frequent treatment and meticulous hygiene, but the patients also must adapt to having a visibly deformed extremity.
Because the edema affects the shape of the limb, which imposes physical and social restrictions, the psychological stress can be considerable, if not, at times, overwhelming. Psychologists who have studied these patients find that the added weight, having to wear special clothing and shoes, being less mobile and having to be constantly alert to possible injury and infection disrupts the patient's well-being and can lead to severe bouts of depression. For those who develop primary lymphedema, the psychological impact is heightened by the sudden onset of a disease with no visible cause. Frequently, this occurs in adolescence, a vulnerable time of emotional immaturity. Those whose lymphedema develops secondarily have an added burden thrust upon them as they deal with the physical and emotional experience of the original malignant disease.
A group of physicians and psychologists working at two different centers in Czechoslovakia, followed 441 lymphedema patients for 15 years. From this group, 45 patients were randomly selected for psychological investigation. The conclusion was that two underlying factors influenced patients: their attitude toward the disease and adapting to the disease. They further grouped their patients according to three psychological profiles.Some patients do not or will not recognize the seriousness of the disease, nor will they admit the possibility of complications. This group tends to shun therapy.
Another type of patient goes to the other extreme and allows the disease and the treatment to consume his or her life. This patient "lives for the limb." The patient becomes obsessive about check-ups, demanding surgical or other types of therapy that may not be indicated. This patient is at risk of a seriously disruptive mental state.
A third type of patient is realistic about the disease. These patients are fully informed about its character and prognosis. They participate in all aspects of care and therapy, including the emotional aspects of the disease. Clinicians and therapists must be aware of the potential psychological stress that lymphedema can incur. The resulting uncertainty and despair can lead to unrealistic expectations or hopelessness. The patient who is informed adequately about the nature of the disease and, at the same time, receives the necessary emotional support will arrive more quickly at a balanced reconciliation with the changes affecting the patient's physical and emotional well-being. A realistic attitude based on knowledge, along with therapeutic and emotional support, will assure a productive and fulfilling life.
(Reprinted with permission from the NLN Newsletter, July 1990)
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