In a survey of MyLupusTeam members, respondents shared how lupus interferes with their daily lives. The condition can make doing everyday chores, socializing, and working difficult.

Survey respondents also shared the emotional toll of lupus, including stress, depression, and anxiety. Even with the physical and emotional challenges of lupus, the majority of respondents are taking steps to manage their lupus, including staying on their medications.

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What Questions Were on the Survey?

MyLupusTeam conducted a survey with 676 members in the United States who are living with systemic lupus erythematosus (SLE).

The survey asked members about:

• The physical, social, and emotional impact of lupus
• How members manage their lupus symptoms
• Members’ satisfaction with the healthcare provider who treats their lupus

MyLupusTeam shares the results of member surveys so our community can learn from each other’s experiences.

Key Finding: 89 Percent Said Lupus Makes It Hard To Do Everyday Chores

MyLupusTeam members shared the impact their autoimmune disease has had on their quality of life. Among the survey respondents, 89 percent reported lupus making it hard to do everyday chores, 84 percent said lupus interferes with their social life, 79 percent had difficulties getting around physically, and 78 percent reported disruptions to work or education.

“Listen to your body and rest when you have to, but don’t feel guilty.”

— A MyLupusTeam member

Lupus also affects members’ mental health and well-being. Eighty-eight percent of respondents reported that lupus causes stress, and 83 percent reported feeling anxious or depressed.

Key Finding: 64 Percent Rated Their Physical Health Fair or Poor

Survey participants were asked to rate their overall physical health on a scale from excellent to poor. Just 7 percent rated their health as excellent or very good. The majority — 64 percent — rated their physical health as fair or poor.

“Just live moment by moment, every day is different. Give in on bad days, and celebrate the good days.”

— A MyLupusTeam member

Key Finding: 83 Percent Reported Staying on Their Prescribed Medications

MyLupusTeam members showed their determination to manage lupus. For example, 83 percent of survey respondents stay on their prescribed medication, and 72 percent are taking steps to manage the impact of lupus. Yet just over half (53 percent) of respondents struggle to afford their lupus-related medical expenses. These costs are often compounded by being on multiple medications.

Key Finding: 60 Percent Are Satisfied With Their Doctor

Survey participants were asked to rate their satisfaction with the doctor who treats their lupus on a scale of “extremely satisfied” to “not at all satisfied.” The majority of members responding to the survey are being treated by a rheumatologist (84 percent). Sixty percent reported being very or extremely satisfied with their doctor. Fourteen percent reported being not at all or not very satisfied.

Members who were happy with the doctor treating their lupus were much more likely to report positive interactions during visits. This included feeling that the doctor recommends regular checkups, listens to them, spends enough time with them, and addresses symptoms of lupus, such as pain or fatigue.

MyLupusTeam Members Provide Social Support and Encouragement

Even as they face the challenges of symptoms that impact physical and emotional health, members shared words of encouragement:

• “Go when you can, stop when you can’t.”
• “Just live moment by moment, every day is different. Give in on bad days, and celebrate the good days.”
• “Listen to your body and rest when you have to, but don’t feel guilty.”
• “Keep taking medication, and do what the doctor tells you. Take it one day at a time!”
• “Try to keep stress levels as low as possible. Stress and anxiety are huge triggers.”

Join the Conversation

On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.

How does lupus impact your general health or emotional health? Let others know in the comments below.

Still have questions about your condition? I can help.