In this chapter, we take stock of the impact of systemic lupus erythematosus on the healthrelated quality of life (HRQOL) and employment of persons with this condition. Of course, far more than impaired health status can affect an individual’s quality of life. The term healthrelated quality of life is used to connote the decrement in an individual’s quality of life specifically attributable to a decrease in health status. In the chapter, we present evidence on employment because it plays a crucial role in determining the quality of life of the majority of Americans who are in the normal working ages. However, we also present evidence with respect to other domains of activity since most of us work to live but many of us don’t live to work.

Conceptualizing the impact of SLE on HRQOL is far more difficult than for rheumatoid arthritis (RA), let alone osteoarthritis (OA) or other non-systemic musculoskeletal conditions. In RA, as opposed to OA, one has to take into account the impact of profound fatigue beyond the obvious impact of symmetrical joint involvement and joint destruction. Symptoms like fatigue that are invisible to the observer may lead others to discount the impacts of the condition. The disconnect between what others perceive and what the person with RA perceives may be a source of psychological disturbance. Also, the uncertainty associated with an uneven course of illness can also take a toll on the individual, at the very least because it makes planning for the future difficult. In SLE, some of the same issues arise, but may be amplified because of the range of manifestations that may occur, adding complexity to invisibility of some symptoms and uncertainty of course.