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.
MyLupusTeam conducted a survey with 676 members in the United States who are living with systemic lupus erythematosus (SLE).
The survey asked members about:
MyLupusTeam shares the results of member surveys so our community can learn from each other’s experiences.
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.
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.
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.
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.
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.
Even as they face the challenges of symptoms that impact physical and emotional health, members shared words of encouragement:
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.