Living with Lupus

Living with LupusInformation provided by the Lupus Foundation of America

How do I explain lupus to others?

Perhaps a good way to start to explain lupus is to make clear what lupus is not.

  • Lupus is not contagious. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is under-active; in lupus, the immune system is overactive.

You can then talk about what lupus is.

  • Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the body’s own healthy tissues and cells as foreign.
  • Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.
  • Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.
  • Lupus is unpredictable: It is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.

Medically reviewed on June 20, 2013

Can I treat lupus with complementary and alternative medicines?

accupuntureIn addition to medications and other medical care from doctors, a large and growing number of people turn to other healing practices to try to improve their health. These diverse therapies — used either with conventional medicine (complementary) or instead of conventional medicine (alternative) — include homeopathy, chiropractic, traditional Chinese medicine (such as acupuncture and Tai Chi), Ayurveda, naturopathy, massage therapy, meditation, biofeedback, herbs or other supplements, and more.

There is some evidence that acupuncture can provide relief from arthritis pain, and that meditation and biofeedback techniques can offer relief from stress and help with pain management. Most alternative and complementary practices, however, have not been through the scientific testing and clinical research that all conventional medicines undergo, so it is difficult to know their effectiveness in treating lupus.

It is known, though, that some herbal supplements can make a person’s lupus symptoms worse, or interact in a harmful way with the medicines a doctor has prescribed. Therefore it is very important for people with lupus who use complementary or alternative medicine (especially herbs or supplements) to discuss these practices with their doctors. Lupus is a complex disease and no one with lupus should rely on complementary or alternative practices instead of the medication they have been prescribed.

Medically reviewed on June 20, 2013