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SOURCE: National Institutes of Health, U.S.Department of Health and Human Services: Link to NIH

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Living with Lupus: Developing Effective Coping skills

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.
Help Patients Gain Control Over Their New Physical Limitations

People with lupus need to accurately assess their pain and fatigue levels and understand how changes in these levels will affect their ability to work, play, and carry out activities of daily living. Health professionals can help patients develop an effective self-management program that sets out achievable goals, realistically paces activities, and avoids over commitments.

Help Patients Gain Control Medically

Doctors, nurses, and other professionals involved in lupus care can teach patients about many medical aspects of the disease, such as warning signs of an impending flare (the patient may have much to contribute to this discussion), medication use, possible side effects, and warning signals for contacting medical personnel. Nurses can also teach strategies for communicating with the health care team. This knowledge and these strategies will help the patient gain a sense of increased medical control over the disease. The Patient Information Sheets can help with this process.

Source: National Institutes of Health, U.S.Dept of Health and Human Services

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