Living with Lupus

If you have systemic lupus erythematosus (S.L.E.), you are not alone. An estimated 1.5 million Americans  have this serious chronic illness.

In lupus, the body's immune system becomes overactive and forms  antibodies that target and damage different organs and tissues such as the skin, heart, kidneys, blood, brain, and joints. A lot of the damage from lupus is caused by the swelling and increased heat of inflammation.

Some people have mild lupus, in which the body makes a small attack on just one or two  parts of the body. Other people have very serious and life-threatening lupus, in which the body has a  hard time continuing to function.

Problems with lupus tend to come and go over time, and the  symptoms are often not clear. Because of these starts (called flares) and stops (quieter disease phases called remissions), lupus can be hard to diagnose. There is no single laboratory test to prove that a  person has this complicated illness. What causes lupus? Researchers are hunting for clues to this mystery. Most likely, lupus develops when a person inherits certain genes from their parents, and then factors in the environment such as infection from a virus, exposure to sunlight, extreme stress, or hormone surges trigger the disease. Lupus is not infectious, meaning that a person can’t “catch” lupus from someone else.

I’m so scared—the doctor just diagnosed me with lupus. What will my life be like?

It is very hard to be diagnosed with a disease that can get better or worse at any point. Living with  lupus means living with uncertainty, and your mind is probably filled with questions:

When will the disease flare?  Will it get in the way of having a family or a regular job?  When will the tiredness stop?

The truth is that no one can tell you what will happen, because everyone with lupus has a different experience. That said, in times of uncertainty, it often helps to focus on things that you can control: how regularly you take your medicines, what you eat, protecting yourself from direct  sunlight.

Use times when you are feeling better to arrange your home and finances in a way that will  make things easier when a flare comes. For example, place lighter kitchen cooking tools where they  won’t strain your aching neck or hands to lift them. Or pre-write bills and address envelopes so that  you can avoid this chore when you’re exhausted.