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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

Patient Information Sheet

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 lupus.

You may have a mild or a more serious form, but no matter how severe your lupus is, you will need close medical supervision. You may also need to make lifestyle changes to keep your disease under control and feel as well as possible. At the beginning, you may feel some of these emotions:

  • anger or depression over the change in your health
  • uncertainty about what to tell family, friends, or coworkers
  • guilt for having lupus and for the burden it may cause your family
  • fear that you may lose your job if you can no longer work regularly
  • fear that you may die.
These are all normal feelings, and you are not alone in having them. You should give yourself time to adjust to your illness. This may or may not be easy for you. Discuss your feelings and concerns with your doctor and nurse and with your family and friends. Sometimes, talking with other people who have lupus is helpful. If you are having a hard time adjusting to your diagnosis, consider seeking the help of a counselor.

Caring for Yourself

  • Learn as much about lupus as possible.

  • Understand that you will experience a variety of emotions, particularly when you are first diagnosed and as you adjust to the fact that you have lupus.

  • Adopt a positive attitude.

  • Evaluate your personal strengths and resources, such as family, friends, coworkers, and community ties.

  • Determine what your needs are, then make a plan to address them.

  • Don't be afraid to set goals for yourself, but be flexible.

  • Learn how to manage the physical aspects of your disease and the effects they have on other areas of your life.

  • Learn to deal with stressful situations, because stress and anxiety can make your lupus symptoms worse.

  • Learn to talk with your health care team, family, friends, and coworkers about lupus and the effect it has on your life.

  • Don't be afraid to seek help for yourself or your family.
Remember that living well with lupus is possible. It is important that you take control of your illness and not allow it to take control of you. Adopting a positive attitude and striving to be happy can make a big difference in the quality of your life and that of your family and friends.

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

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