Survey Shows The Burden Of Lupus On Work And Wallet


Results of a Roper survey of the lupus community highlight that in addition to the physical burdens of lupus, the disease can contribute to significant economic challenges among patients and caregivers. Patients with systemic lupus erythematosus (SLE or lupus), caregivers and physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey.

A majority of patients, supporters and doctors report that people with lupus change career plans because of lupus, which is a chronic and potentially disabling disease. More than half (63 percent) of respondents with lupus quit working or retired earlier than planned, about two-thirds (67 percent) reduced the number of hours worked, and 51 percent of patients changed to a less strenuous job.

Lupus can occur at any age, but appears mostly in young people aged 15 to 44– prime working years. Inability to work seems to weigh heavily on patients, emotionally and financially. For example, 82 percent of patients reported that not working makes them feel they are not contributing their fair share to the household, and 83 percent found it devastating to leave their jobs due to lupus.

Many people with lupus say the disease impacts their productivity and has an undesirable effect on their relationships with co-workers. In fact:

>>72 percent of patients admit they are not as productive as they could be at work as a direct result of lupus.

>>Approximately 80 percent of lupus patients say that their condition has caused them to take more sick days.

>>59 percent of lupus patients surveyed say that other people think that lupus affects their reliability and dependability.

>>About two-thirds (69 percent) of patients say they only tell a few co-workers about having lupus.

"It is important to reinvent yourself in meaningful ways when a chronic illness limits your original life plans," said Joan Merrill, MD, chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, and consultant to Human Genome Sciences and GlaxoSmithKline. "However, this is hard to do. Friends and family can help by valuing and supporting a new direction or modified goals."

Some people living with lupus have had to think differently about their jobs or careers because they found it difficult to fulfill their responsibilities, due to lupus. As disappointing as this may be, many people living with lupus have been able to find jobs in different or related fields that are more suitable to their situations. There are resources and tips to help you better manage your career, available at