Survey: 91 Percent of MyLupusTeam Members Say Lupus Interferes With Quality of Life | MyLupusTeam

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Survey: 91 Percent of MyLupusTeam Members Say Lupus Interferes With Quality of Life

Written by Beth Schneider
Posted on September 1, 2023

In a recent survey of MyLupusTeam members, respondents shared how lupus interferes with their daily life, including making 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 large majority are taking steps to manage their lupus, including staying on their medications.

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 health care 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.

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.

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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.

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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 large 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.

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Members who are satisfied with the doctor who treats their lupus were much more likely to have positive interactions with their doctor. This included feeling that the doctor recommends regular checkups, listens to them, spends enough time with them, and addresses symptoms of lupus including pain or fatigue.

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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.”

Talk With Others Who Understand

MyLupusTeam is the social network for people living with lupus and their loved ones. On MyLupusTeam, more than 224,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

How does lupus impact your general health or emotional health? What advice do you have for others living with this chronic disease? Describe your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on September 1, 2023
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Beth Schneider has been a market research professional for over 35 years. She focuses on both survey research and social listening analysis. Learn more about her here.

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