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A silhouetted woman sits hunched in a dark room as cascades of light shine through a barred window. On image text reads Lupus in America.

Expectation vs. Reality: The Impact of Lupus on Quality of Life

“But you don’t look sick,” is what so many people living with lupus are told. Our 2020 Lupus In America survey revealed what it is like to live with a chronic condition that has been described by people as “frustrating, exhausting, and hell.” It is no surprise that its all-encompassing nature negatively affects the quality of life.

Support makes a difference

More than half of people with lupus say help with household duties and emotional support matter most. Many do not feel satisfied with the help they receive. This could be because many people living with lupus report having a tough time asking for support from family and friends.

The areas of life where support is needed, including help with shopping, transportation, attending doctor’s appointments, medical care, and personal care. Imagery includes two purple hands reaching for each other.

Work is not always possible with lupus

Thirty percent of people surveyed work full-time, and 7 percent work part-time. However, more than 6 in 10 people feel their lupus interferes with their ability to work. People who took the survey reported missing 6.2 hours of work in the last 7 days.

How lupus impacts work based on the last 7 days, including 16% work time missed, 54% impairment/reduced on-the-job effectiveness, and 62% average activity impairment. Imagery includes a hand holding a piece of paper and a briefcase of papers.

Mental health and lupus

Mental health is just as important as physical health. Of those surveyed, well over half of people report having anxiety and/or depression. Many feel lupus adds a new level of anxiety to their life. This is compounded by being unable to do the things they enjoyed before their diagnosis.

“Have few useable hours per day and life is completely changed to poor with this disease.” – 2020 Lupus In America survey respondent

The frustrations and disruptions associated with lupus, including stats: 61% are frustrated that there are not more treatment options, 57% are unable to enjoy outdoor activities/sunlight, and 49% are unable to do the things they enjoyed before diagnosis. Imagery includes a female sitting, holding her legs, trapped indoors.

Family planning takes extra care

Women with lupus often wonder if having children is remotely possible. It is important to work with a healthcare provider before a woman plans to become pregnant because of the complications that could arise if lupus symptoms are not well controlled.

How family planning takes extra care when living with lupus, showing that 84% of people who took the survey have children, and 41% say they postponed or decided not to have children because of lupus. Imagery includes a family of swimming ducks.

Lack of lupus symptom control

Despite evolving research, there is currently only 1 FDA-approved medication for the treatment of lupus. That could be why so few people cite their symptoms as controlled. Many seek alternative treatments such as vitamins and supplements, diet, exercise, and OTC medications.

Only 16% of people with lupus feel their condition is controlled, 63% report their lupus severity as moderate, and 20% report it as severe. Imagery includes an unstable stack of teacups and plates balanced on the edge of a table.

The Lupus in America 2020 survey was conducted online from January 1 through February 25, 2020. Of the 589 people who completed the survey, the average age was 52.5 years, with 61 percent being over age 50. All respondents were people who have been diagnosed with lupus.

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