A lupus diagnosis can significantly impact quality of life and how you perform daily activities. It makes sense that many people with the condition lean heavily on their health care providers to guide them through the journey. Although some people with lupus are very satisfied with their doctors, that’s not necessarily true across the board.

To evaluate how a lupus diagnosis affects daily activities and how the condition is being treated, MyLupusTeam conducted an online survey. The results were released at the 14th International Congress on Systemic Lupus Erythematosus (LUPUS 2021) which was held in conjunction with the 6th International Congress on Controversies in Rheumatology and Autoimmunity (CORA) in October. The MyLupusTeam survey outcomes, shared below, may not surprise those who live with lupus every day.

The survey results show why it is so important that doctors and other health care professionals take the time to understand exactly what those with lupus need from them, and how they can tailor their care to each person’s preferences.

MyLupusTeam surveyed 593 people with lupus age 19 or older between Jan. 16 and Jan. 21, 2020. Key topics included in the survey were lupus symptoms, quality of life, and lupus treatments.

Symptoms of Lupus From Those Who Know

MyLupusTeam members reported experiencing a wide variety of lupus symptoms, including joint pain and swelling, fatigue, muscle pain, skin issues, numbness and tingling in the extremities, and eye problems.

Members of MyLupusTeam described their symptoms:

• “My face is pretty broken out with horrid rash bumps. It is very embarrassing.”
• “It helps to read that others are dealing with symptoms like I do. I deal mainly with unrelenting fatigue, forgetfulness, pain, and depression.”
• “I’ve been dealing with a lot of depression, joint pain, and swollen glands.”

Satisfaction With Health Care Providers

Just 23 percent of MyLupusTeam members surveyed said they were “very satisfied” with their current treatment regimens. Another 8 percent said they considered themselves “extremely satisfied” with their current medications.

When it came to rating their relationships with health care providers, 26 percent of respondents reported being “very satisfied” with their health care providers, while another 22 percent of those surveyed said they were “extremely satisfied.” The majority of respondents — 52 percent — did not feel highly satisfied with their health care providers.

When asked what they’d like from their doctors, MyLupusTeam members offered a wide range of responses. Topping the list was physicians who listen and understand, followed by a desire for more information and more time with their doctors. Several survey responses shed additional light on what they’d like from their providers:

• “Spend more than eight minutes with me during my appointment.”
• “Spend more time on informing me about how to deal with this disease, what to watch for, and how to prevent flare-ups, and be more compassionate.”
• “Listen to our symptoms. We are not making up stories to get attention.”

Members said they wished their health care providers would listen or care more about them. They also noted that they preferred to spend more time with their providers, not only during office visits, but also when planning for the future. Some wanted physicians to educate them more about the disease course and what to expect in the future.

How Lupus Affects Daily Life

Many people with lupus find themselves unable to perform some of the activities they’d like to do because of their symptoms. Daily activities like exercises, chores, maintaining a social life, and sleeping can be challenging for MyLupusTeam members who live with issues like pain, depression, and anxiety.

“The results from the survey appear to confirm that the impact of lupus is far-reaching — both the physical and emotional aspects,” said Beth Schneider, senior director of research with MyLupusTeam. “It would be beneficial for treating doctors to listen and understand the holistic impact of lupus to better meet their patients’ needs.”

Talk With Others Who Understand

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 200,000 members come together to ask questions, give advice, and share their stories with others who understand.

How has your life been impacted by lupus symptoms? Share your experience in the comments below, or start a conversation by posting on MyLupusTeam.