Explaining lupus to others

A network of friends and neighbors can give the same kind of valuable support as family members: lending a helping hand with chores and errands, offering a sympathetic ear or a comforting shoulder. But in order to give support, friends need to have some understanding of the nature of lupus. 

It is not necessary to share all of the details about lupus. But you will want to describe the possible symptoms of lupus and your symptoms in particular. Explain your treatments, as well as the fact that lupus can develop in men and women, teens, and children. Be ready to respond to questions and try not to react impatiently to sometimes inappropriate advice and comments. Let your friends know what to expect when the disease is active, such as last-minute cancellations, why usual activities might need to be scaled back, and side effects of prescribed medications.

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 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.
• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissue.

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 it 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

Use this worksheet (PDF) to help you explain lupus to someone in 30 seconds.