Finally, good news for persons with fibromyalgia syndrome (FMS). New surveys reveal that public perceptions of FMS are in many ways much more positive than those afflicted with the disorder commonly believe. At the same time, however, better education of the public and persons with FMS will help to assure that early and proper care for this disorder can be received by those affected.
FMS is a condition characterized by chronic, widespread pain and tenderness, decreased physical function, fatigue, and difficulty sleeping. It affects up to 12 million Americans, but an estimated 70% are misdiagnosed or undiagnosed. It mostly afflicts women, but can impact men as well.
In a unique study comparing the attitudes of FMS sufferers with those of the general public, the American Chronic Pain Association (ACPA) in partnership with Forest Laboratories Inc. recently reported results from two new national surveys, called “Two Takes on Fibro: Public Perceptions and Private Realities.” Conducted by StrategyOne and the Harris Interactive Service Bureau, 1,215 men and women with FMS and 1,002 adults from the general population were interviewed during October 2011.
For starters, the surveys show that people with FMS falsely believe that the public views them negatively. For example, among the general public, 41% view FMS sufferers as “courageous,” while only 17% of adults who have the condition believe society actually perceives them that way. Similarly, a quarter of the general population view persons with FMS as “strong,” although only 15% of persons with FMS think the public feels that way about them.
There also were other sharp discrepancies. Whereas a majority of persons with FMS think the public views them as complainers, weak, or lazy, survey respondents from the general public rated those traits as being quite low in persons with FMS. So, overall, the good news is that the public has much more positive views of them than FMS sufferers typically believe.
At the same time, although 92% of the general population has heard of fibromyalgia, and 1-in-3 persons know someone who has been diagnosed with FMS, relatively few understand the full impact of the condition on daily life. For example, the public thinks it is more difficult for persons with FMS to take a 20-minute walk than is actually the case, but they underestimate the problems FMS sufferers have with common activities like driving a car or sitting through a movie. Other ways in which FMS impacts everyday activities include:
- 71% people experiencing FMS symptoms said they have difficulty vacuuming, doing yard work, or cleaning their apartment or house.
- More than half (58%) had difficulty lifting and carrying a bagful of groceries or taking out the trash.
- Romantic intimacy suffers as a result of FMS, especially among men…
- 56% of men and 48% of women with FMS said it has become difficult to be physically intimate with their partner.
- 25% of men and 15% of women reported that when experiencing FMS symptoms they could no longer sleep in the same bed as their partner.
- Fibromyalgia also may contribute to decreased income, missed work, increased sick time, and missed career opportunities…
- 70% of FMS sufferers said that they had difficulty completing tasks at work, and 61% admitted their work life or career became more difficult because of their fibromyalgia symptoms.
- 60% responded that they had to take more sick/personal days, and 56% reported their personal income had decreased because of their fibromyalgia symptoms.
The survey also found that, while early diagnosis of FMS is critical, and two-thirds of people with the disorder say it disrupts their normal routines, many persons with symptoms do not seek help soon enough. Among survey respondents with FMS, more than three-quarters (77%) waited up to 3 years before seeking help from a healthcare professional. Remarkably, 70% of persons with FMS reported they hesitated to visit a healthcare professional because they thought their symptoms would simply go away; however, once they did seek help, 55% said talking with their healthcare provider was a good decision.
According to a press release, the survey results are expected to help bridge the perception gap between the public and those who live with fibromyalgia, improve awareness of the condition, promote a compassionate dialogue, and help bring about a better system of support for people with FMS. Penney Cowan, founder and executive director of ACPA, says:
“Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society. 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. …the good news is that people with fibromyalgia, along with their healthcare providers, can learn to manage their condition.”
More complete information on the “Two Takes on Fibro” surveys is available from the ACPA [here].
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