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The Results Are In: Anxiety and Depression Are Common Among Those Facing Lupus

Posted on April 13, 2020

We recently asked 593 members of MyLupusTeam about their experience living with lupus. They shared candid insights into symptoms, triggers, obstacles to managing the condition, and factors that influence their satisfaction with their doctors.

One clear finding is that the emotional toll of living with lupus is significant. About 72 percent of survey respondents reported commonly feeling anxious, and 70 percent reported commonly feeling depressed. Dealing with anxiety and depression was cited as one of the top three obstacles to managing lupus, alongside pain and relentless fatigue.

When doctors adequately help manage anxiety and depression, people with lupus express more satisfaction with their health care. About half (48 percent) of those surveyed reported being mostly satisfied with their doctor. Among those who are mostly satisfied, 74 percent said their doctor is addressing these mental health issues. Among those who reported being mostly dissatisfied with their doctor, only 28 percent said these issues are being addressed.

Here are some discoveries from the survey:
  • Although 69 percent of respondents reported being less than fully satisfied with their current lupus medication, only 9 percent said “new treatments” are what they most want from their doctor.
    • Much higher on the priority list were “listening and understanding” (33 percent), “more information” (22 percent), and “more time” (22 percent).
  • Nearly everyone who participated in the survey reported experiencing joint pain and swelling (93 percent) and fatigue (92 percent). Other common symptoms included:
    • Muscle pain (81 percent).
    • Skin issues (79 percent).
    • Numbness or tingling in the hands or feet (75 percent).

It’s clear from the survey that living with lupus takes a toll on quality of life. It can make it hard to exercise, do everyday chores, or pursue career and education goals.

As promised, we’re sharing the results of our survey with the members of MyLupusTeam. Review the slideshow below to see more about what other people with lupus are experiencing. Please post your questions and share your tips for dealing with some of these challenges. As always, we welcome your feedback, questions, and comments.

A MyLupusTeam Member said:

Thank you for this, I am taking meds for depression now. I didn't think it was a good idea but my doctor suggested did I take something to help.

posted 6 days ago

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