Q: I lived with joint pain, skin rash, and other symptoms for two years before my doctors figured out I have lupus. Why did it take so long?
A: If it’s any solace, you’re not alone. The Lupus Foundation of America recently surveyed 3,022 adults with systemic lupus erythematosus, or lupus, about the process of getting diagnosed. Lupus is an autoimmune disease in which the immune system mistakenly attacks many parts of the body. The sites most commonly affected are the joints, skin, kidneys, heart, lungs, blood vessels, and brain.
The foundation found that nearly 40 percent of respondents waited more than one year after the onset of symptoms to receive an accurate lupus diagnosis. At the time of diagnosis, more than a third of respondents reported having severe symptoms.
One challenge that doctors face with identifying lupus is that the disease’s symptoms often mirror those of many other conditions. In the Lupus Foundation survey, almost half the respondents said that fatigue and musculoskeletal pain or swollen joints were the symptoms that sent them to the doctor in the first place.
Among other findings, 41 percent of the patients surveyed said they were initially diagnosed with a condition other than lupus. More troubling, over half (54 percent) were told by doctors that nothing was wrong or their symptoms were psychological in origin. Because prompt diagnosis of lupus reduces the risk for organ damage, the Lupus Foundation suggests that improved awareness of the disease by doctors and better communication with patients are essential.
This article first appeared in the November 2018 issue of UC Berkeley Health After 50.