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LUPUS ERYTHROMATOSUS A TO ZSOURCE: National Institutes of Health, U.S.Department of Health and Human Services: Link to NIH
Living with Lupus
You have recently been diagnosed
with a disease known as systemic lupus
erythematosus (SLE). It has probably
taken time to arrive at this diagnosis.
Now that you know, you may feel
relieved but also overwhelmed. You
probably have a lot of questions about
Many physical and emotional issues confront people with lupus, both in the beginning and throughout the course of their disease. The most common issues include the following.
Fatigue: Fatigue is a chronic problem that is usually accompanied by joint pain and stiffness. It can affect many aspects of your daily life.
Changes in personal appearance: You may experience changes in your personal appearance. Discoid lupus (a form of lupus) may cause sores, blotches, or scarring on the face, arms, shoulders, neck, or back. The medications for lupus can also sometimes change your appearance. For example, corticosteroids can cause weight gain, excessive hair growth, or swelling. Some drugs may cause hair loss. These changes in the way you look can be emotionally challenging to deal with.
Changes in physical ability: Many people with lupus feel isolated because their fatigue and need to rest keep them from maintaining normal work and social schedules. You may feel frustrated if you can't participate in outdoor activities with family or friends because of sensitivity to the sun. There will be times when you may feel it is easier to stay home than to make plans and later cancel them because you are too tired or not feeling well.
Psychological effects of corticosteroids: Corticosteroids are used to treat many of the symptoms of lupus that result from inflammation. Their use can cause anxiety, mood changes, forgetfulness, depression, personality changes, and other psychological problems. You need to know about the possible side effects of these drugs while you are taking them. It is also important that your family and friends understand the effects of these drugs so that they can be supportive if you should experience any side effects.
Depression: You may feel sad or depressed at times in your struggle to control lupus or because of the medications you take. Good communication with your doctor and health care team, as well as with your family and friends, is important in helping you cope with these feelings.
Concern for the future: Because the future and course of your disease are unknown, planning for your job, your family, and life in general can be difficult at times.
Family concerns: Like you, your family can be overwhelmed about your diagnosis and may have a difficult time understanding and adapting to your disease. They may feel confused, helpless, and afraid. Because of your physical limitations, traditional roles and responsibilities within the family may need to change. It is important that everyone talk openly and honestly with each other. It is also important that your family members learn about your disease so they can better understand your physical and emotional condition and the changes in your family that may result.
Source: National Institutes of Health, U.S.Dept of Health and Human Services