Dual Fibromyalgia Surveys Reveal Surprising Results
The results of a unique set of dual surveys were released last week by the American Chronic Pain Association (ACPA) in partnership with Forest Laboratories, Inc. The two national surveys compared the general public's perceptions with the private realities of people with fibromyalgia. Some of the results were pleasantly surprising.
One of the biggest surprises, at least for those of us who have lived with FM for many years, was that people with fibromyalgia inaccurately believe the public views them negatively. Actually, 41 percent of the general public believes people with fibromyalgia are courageous, while only 17 percent of people who have FM believe society views them this way.
By contrast, 66 percent of people with FM think society views them as complainers but only nine percent of the general public actually described them that way. People with FM listed "complainers," "weak" and "lazy" as the top traits they think the public ascribes to them. In fact, the top traits the public used to describe people with FM were "courageous" and "strong."
“Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society,” says Penney Cowan, founder and executive director of ACPA and someone who has lived with fibromyalgia. “These survey results show that some people with fibromyalgia have misperceptions about how society views them, and our hope is that they learn about these findings and feel empowered to speak openly about their experiences with this condition.”
Another somewhat surprising finding revealed that 92 percent of the general population has heard of fibromyalgia, although not so surprisingly, many still do not understand the challenges FM may pose for those living with it.
About the Surveys
The survey participants included 1,022 adults (18+) in the general public and 1,215 adults (18+) who had been diagnosed with fibromyalgia. In the FM group, 22 percent were men and 78 percent were women. The surveys were administered in mid-October 2011.
In many instances, the public perceived FM as being more life-altering than people with FM reported. For example, 71 percent of the public thought people with FM would have difficulty keeping up with exercise, while only 23 percent of people with FM said that was a problem for them. 65 percent of the public thought that walking continuously for 20 minutes would be difficult for someone with FM but only 30 percent of those with FM reported having trouble walking for that length of time.
On the other hand, there were a few activities that people with FM reported having more difficulty with than the general public thought. For example, 61 percent of people with FM said they have difficulty driving a car, while only 41 percent of the general public thought that would be a problem. Perhaps most surprising was the fact that 75 percent of people with FM said they have difficulty watching a movie but only 18 percent of the public thought that would present problems.
For me, the results of this survey were personally gratifying. When I co-founded the National Fibromyalgia Association 15 years ago, the name of the organization was the National Fibromyalgia Awareness Campaign and our primary purpose was to raise awareness about fibromyalgia. At that time, very few people had ever heard of it. These surveys validate that we achieved our main goal. An amazing 92 percent of people know what FM is!
The fact that so many people view us a courageous and strong is also extremely encouraging. Yes, we still have work to do, but I think we've made incredible progress in a few short years.
One statistic from the surveys that disturbed me was that 77 percent of the people with FM had waited up to three years to seek help from a health care professional. Most (70 percent) thought their symptoms would go away. Since early treatment usually results in a better prognosis, I think one of our efforts going forward needs to be to encourage people who have symptoms of FM to see their doctors as soon as possible.
More Survey Stats
If you are interested in more information and statistics from the survey, I would encourage you to download the Fact Sheet and the Executive Summary:
Two Takes on Fibro Survey Fact Sheet
Two Takes on Fibro Survey Executive Summary
I'd love to know your reaction to these surveys. Were you surprised? Encouraged? Discouraged? Please share your thoughts.
“New surveys reveal striking differences between public perceptions and private realities of people with fibromyalgia.” American Chronic Pain Association. March 21, 2012.