Explaining lupus to others
A network of friends and neighbors can give the same valuable support as family members: lending a helping hand with chores and errands, offering a sympathetic ear, or a comforting shoulder. But to give consent, friends need to have some understanding of the nature of lupus.
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t 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. Tell your friends what to expect when the disease is active, such as last-minute cancellations, why usual activities might need to be scaled back, and the side effects of prescribed medications.
An excellent way to start explaining 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 underactive; in lupus, the immune system is overactive.
Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that multiply 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 healthy tissues and cells as foreign.
Lupus is a chronic disease. This means anyone who develops lupus will have lupus for the rest of their life. As with other chronic illnesses such as diabetes or asthma, lupus has no cure. However, there are medications and lifestyle adjustments that help most people live active and productive lives despite these illnesses.
Lupus has many different symptoms, and it affects each person differently. Lupus can cause a mild skin rash or achy joints or 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 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 others understand your physical and emotional ups and downs and the changes you may have to make to schedules, plans, and commitments. Please raise awareness of Lupus.
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