Many people with lupus go through phases in which they feel that control over their life is slipping from their own hands into those of an unpredictable and unpleasant disease. This sense of powerlessness can occur not only during flares but also during periods of recuperation and remission. It forces the patient to choose between two options. This choice may be made many times during the course of the illness.

The first option is for the patient to submit to the disease and accept lupus and a lifestyle of illness as her or his identity. This choice may appear attractive to a newly diagnosed patient who is exhausted from the long battle of uncertainties related to lupus or to a long-term patient who is exhausted from fighting the disease. However, this option offers a life of self-pity, negativity, and significantly diminished horizons.

The second option is for patients to create a new identity based on reworked, realistic goals and expectations. Inherent in this second option is a sense of greater control, an improved self-image, and a positive and hopeful attitude. This option requires imagination, resilience, and determination, and depends heavily on the existence of an adequate support network that can reinforce gains and buffer the occasional disappointment. This option offers true quality of life.

Perhaps the greatest gift that the health professional can offer patients is the opportunity to choose this second option. This gift can be given in several ways.

Help Patients Gain Control Over Feelings and Emotions

Patients must first assess their needs and the needs of those around them; evaluate their personal strengths, resources, and weaknesses; and develop effective communication strategies for dealing with family, friends, and the health care team. The health professional can assist the patient or suggest other professionals who can help. Many health professionals - for example, nurses, health educators, psychologists and psychiatrists, social workers, and occupational and physical therapists - are experienced in rheumatology and lupus. These professionals can educate family and friends about the needs and circumstances of people with lupus. The health professional can also encourage the patient to seek out other supportive mechanisms, such as:

• local support groups
• educational and selfmanagement programs offered by the Lupus Foundation of America, the Arthritis Foundation, and the SLE Foundation
• pen pals.