What is Lupus?
Lupus develops when the immune system, which normally attacks germs and viruses, instead attacks healthy tissues of the body. No one is sure why this happens.
This attack can cause inflammation, which leads to redness, pain and swelling in the affected parts of the body. These include the joints, skin, kidneys, lungs, blood vessels, heart, or brain. Some of the most common symptoms of lupus include fatigue, painful or swollen joints, skin rashes, or kidney problems.
Lupus symptoms, as well as treatment for these symptoms, vary from person to person. Learning more about lupus is a good step toward understanding and helping the person you care about. It can help you cope with the disease, too.
Resources listed on this page can help you learn more.
For the Family
Because lupus may affect a person in many ways, it can affect her relationships with others too. Her role and responsibilities within her family might change, which will probably make your role change, too.
One of the most important things a person living with lupus can do to stay healthy and prevent lupus "flares" (times when lupus symptoms become worse) is to avoid stressful situations.
Families can work together to limit stress and support the family member they care about.
Doctors and other professionals, such as nurses and social workers, can help families do this too.
"Work as a team. Understand what is going on in the daily life of the person you care about, and how you can together make it successful."
How Lupus Can Affect Someone's Life
If someone you know or care about is living with lupus, these are some of the common things she - and you - might have to cope with:
- Fatigue. This can affect her life in many different ways. Even getting a lot of sleep and rest does not always make a person with lupus feel better.
- Changes in how she looks. Depending on her symptoms and treatment, a person with lupus might have changes in skin, hair, or weight. These changes in appearance can be emotionally hard to deal with.
- Changes in what she can do physically. People with lupus may feel isolated because they are tired and need a lot of rest, or have to avoid the sun. Because of this, the person you care about may have to make changes in her work and social schedules.
- Family concerns. She and her family might feel overwhelmed by her diagnosis. The family might feel confused, helpless, or afraid.
- Roles and responsibilities of people in the family may need to change.
- Effects of certain drugs. Some drugs used to treat lupus can cause a person to be anxious, moody, depressed, forgetful, or have personality changes. It is important for family and friends to understand these effects and support the person living with lupus.
- Depression. A person with lupus might feel sad or depressed. Medications might also cause these feelings. Encourage her to talk with you, her doctor, representatives of her faith community, and other friends and family who can help her cope with these feelings.
- Concern for the future. Not knowing how lupus will affect her in the future can make planning difficult.
Adapted primarily from "Living with Lupus," NIAMS
Tips for Family Members
- Talk openly with your family member living with lupus. Encourage her to be honest with you.
- Learn about lupus and help others in your family learn about it, so they can understand how it affects people with the disease as well as their families.
- Discuss with your family member what kind of support she needs.
- Acknowledge her accomplishments, no matter how small.
- Be thoughtful. If you donÕt understand something, ask questions.
- Use the resources on this page, such as groups for families and caregivers.