Research opportunity: tell us what you think others think about your fibromyalgia
Having an “invisible” disability can be frustrating. If you have fibromyalgia, you’ve probably heard others say, “But you look great!” One of the frustrations I often hear from people with fibromyalgia is that important people in their lives – family, coworkers, and healthcare providers – don’t seem to understand the impact that fibromyalgia can have.
Researchers in The Netherlands have developed a new tool to measure how having a chronic medical condition can affect different aspects of your life and how others might interact with you. This questionnaire has been tested in patients in a rheumatology clinic and we’d like to see what results will be uncovered in a larger group of people with fibromyalgia – so we’re reaching out to an online community.
We are interested in learning about the impact of fibromyalgia in your personal, professional, and social surroundings. Your participation in our survey will help us gain more information that can benefit other people with fibromyalgia, health care professionals, and society at large.
This survey is completely anonymous and will be completed in one sitting. Your responses will not be matched to any personal information or identifiers. This survey should take approximately 15-20 minutes to complete. Thank you for your participation!
Here’s the link to the survey:
Editor’s Note: Dr. Dawn Marcus was the lead author in the recently published study “Fibromyalgia Family and Relationship Impact Exploratory Survey.” This survey is a continuation of her ongoing interest in and research into how fibromyalgia affects patients’ lives.
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