How Perceptions Impact Those With Fibromyalgia

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Two national surveys, released last week by the American Chronic Pain Association, showed significant differences between public perceptions of fibromyalgia and the realities of living with the condition.

The ACPA partnered with Forest Laboratories Inc. to try to compare the attitudes of people living with fibromyalgia with those of the general public.  The results showed that fibromyalgia patients inaccurately believe the outside world views them negatively. Of the people surveyed, 41 percent said they think people with fibromyalgia are courageous. Only 17 percent of the fibromyalgia patients believed society views them in such a way.

“Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society,” said the founder and executive director of ACPA, Penney Cowan who lives fibromyalgia herself. “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.”

Fibromyalgia is a common musculoskeletal disorder in which people experience long-term, widespread pain throughout the body. The condition is also linked to fatigue; sleep disturbances, headaches, depression, and anxiety. The American College of Rheumatology estimates that 3 to 6 million Americans have fibromyalgia and it’s the second most common musculoskeletal disorder. The exact cause of the condition is still unknown, but some researchers believe it might be caused by a miscommunication between the brain and the nerves. For some reason the brain overreacts to normal stimuli and perceives things that most people wouldn’t even notice as pain. MRI’s have shown that the areas in the brain that are responsible for pain react differently in fibromyalgia patients.

The lack of conclusive information about fibromyalgia within the medical community makes it difficult for the general population to understand the condition. The surveys, known as “Two Takes on Fibro: Public Perceptions and Private Realities,” also showed that while 92 percent of people of have heard of fibromyalgia, most do not understand the everyday challenges the condition poses. Many people did not know that simple tasks such as driving, doing chores, and getting dressed for the day are extremely painful for fibro patients.  So, while the general population viewed those living with fibromyalgia positively, they did not understand how difficult life could be with the illness.

Overall, the studies reinforced what many with fibromyalgia already knew, people are sympathetic, but there is still a lot more to learn. Cowen said the lack of understanding from the general public could keep people dealing with symptoms from seeking treatment. Also the lack of knowledge about fibromyalgia may contribute to why patients feel they are seen negatively. Those who struggle with fibromyalgia sometimes assume that ignorance means people are looking at them negatively.

Researchers questioned 1,215 men and women diagnosed with fibromyalgia and 1,022 adults from the general population for the surveys. The survey of people with fibromyalgia consisted of 58 questions and the general population survey included 37 questions.

Some experts in the field say assumptions and perception should be the big take away from the surveys. Writer, speaker, and fibromyalgia patient, Sue Ingebretson, said negative assumptions and feelings run rampant within the fibromyalgia community. Her book, FibroWHYalgia discusses her struggles with fibro and how she was able to go from being completely disabled to having almost no symptoms. Since her journey, Ingebretson has dedicated her life to counseling others who deal with chronic pain and helping them manage their symptoms.

She says most people with fibro engage in negative self-talk and because they look at themselves negatively, they assume others do as well.  Negative perceptions about oneself can often make the condition worse. People with low self-esteem often do not bother exercising, changing their diets, or seeking counseling, all of which are known to reduce fibro symptoms.

“I wouldn’t be here without having to crawl through the chaos, that I really had created,” Ingebretson said. “I love talking about that because it’s not about blame and people who are really sick have a hard time seeing the difference. They think that going over your life and making changes is about pointing out blame or looking at failure. You can’t change anyone, you can only change yourself and you can only change yourself by looking at what you’ve done and is it working? Or do you need to do something else?”

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