People living with fibromyalgia not only suffer from chronic widespread pain, they often endure depression, anxiety, fatigue and mood swings. As a result, many fibromyalgia patients think the public views them negatively — as lazy or chronic complainers. But it turns out that perception is largely wrong, according to two new surveys released by the American Chronic Pain Association (ACPA) and Forest Laboratories Inc.
“Many people in the general population have misperceptions about the impact fibromyalgia can have on people’s lives,” Penney Cowan, executive director and founder of ACPA. “Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society,” says Cowan, who is fibromyalgia sufferer herself.
The surveys reveal that people with fibromyalgia have a misperception that society views them negatively. Fibromyalgia sufferers are viewed as courageous, according to 41 percent of the general public. Yet, only 17 percent of fibromyalgia patients believe that society views them as courageous.
The “Two Takes on Fibro: Public Perceptions and Private Realities” surveys were designed to gather views about the condition from the general public and fibromyalgia patients themselves. 1,022 adults from the general public and 1,215 fibromyalgia patients were questioned as part of the studies.
In addition to the public perception of fibromyalgia, the surveys also revealed the striking impact fibromyalgia has on careers, relationships and everyday activities:
Career and Work
• 60% of fibromyalgia patients said they take more personal days or sick days.
• 70% said they have trouble completing work-related tasks.
• 56% reported that their personal income has declined due to their symptoms.
• 61% disclosed that their work life was more difficult due to fibromyalgia.
Intimacy and Romance
• 64% of fibromyalgia patients reported intimacy difficulties.
• More men (56%) than women (48%) found it difficult to be physically intimate with a partner.
• 15% of women and 25% of men reported not being able to sleep in the same bed as their partner during a fibromyalgia flare up.
• 71% of fibromyalgia patients disclosed having difficulty cleaning, vacuuming or doing yard work.
• 58% reported difficulty taking out the garbage or carrying groceries.
The Significance of Early Diagnosis
Sixty-seven percent of fibromyalgia sufferers reported they weren’t happy with their ability to carry out everyday activities, yet over half put off seeking medical treatment. Three out of every four respondents admitted waiting up to three years before getting help from a health care provider.
What’s the reason for the delay in seeking help? Most (70%) felt that their fibromyalgia symptoms wouldn’t go away despite seeing a health care professional. Yet, over half of the respondents said that when they finally did seek help, it was a good decision.
“As a doctor who has been treating fibromyalgia for several years, I’m encouraged by surveys like these that increase the conversation about the condition,” said Dr. Beth Hodges, a physician with Hodges Family Practice in Asheboro, N.C. “I urge people who think they may have fibromyalgia to seek help from their healthcare provider and maintain an open dialogue. The sooner people with fibromyalgia are diagnosed, the sooner they can begin an effective management plan.”
Research for the studies was conducted by Edelman StrategyOne and fielded by the Harris Interactive Service Bureau.