Rachel Bevins has been in pain since 1996. At first, the pain was intermittent; for the past three years, it has been unrelenting.
“Pain is just a part of me, just like I have brown hair and I weigh so many pounds,” said Bevins, 32, who suffers from fibromyalgia. “I have pain. That’‘s just a normal part of my life.”
According to a new survey released Thursday from the American Chronic Pain Association, Bevins’’ attitude is also normal, at least among pain sufferers.
The Americans Living with Pain Survey canvassed 800 people suffering from chronic pain and found they often denied the pain, delayed seeing a doctor and, when they did seek medical help, tended to shy away from treatment.
Almost a third of Americans experience chronic pain at some point in their lives, said a recent report from the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) and the National Pharmaceutical Council.
At any particular point in time, about 50 million Americans suffer from persistent pain. Chronic pain is the No. 1 cause of adult disability and represents about $100 billion in lost productivity each year, according to the report.
The pain survey, which was supported by Endo Pharmaceuticals, found 72 percent of people with chronic pain have lived with it for more than three years, while a third have lived with it for more than a decade. At the same time, 44 percent of those who have talked to their doctor about the pain delayed doing so. Slightly more than half (53 percent) of those who eventually visit their doctor do so because their pain is getting worse.
Despite this apparent reluctance to see a health-care professional, the majority of those surveyed admitted pain had a major impact on their lives, including 82 percent of young people who said they were affected emotionally by the pain.
One in six said it had adversely affected their careers.
Almost half (45 percent) said it had negatively impacted their personal relationships.
And 51 percent of those employed said it had affected their productivity; 61 percent said it affected their daily routine, and 27 percent said it affected their ability to actually get to work.
For Bevins, who lives in Newport News, Va., chronic pain has meant giving up some of her most precious dreams and completely overhauling her life to accommodate it.
She has had to give up her dream of being a professional dancer. And she has had to stop working as a public school teacher because, she said, “I’‘m not dependable as far as times go. There are days that I wake up and can hardly get out bed, and then there are days where my mornings may be fine but then my afternoons I’‘m totally wiped out.”
And although she and her husband, Brian, are keeping their fingers crossed, they have had to shelve their plans for having a baby, at least for the time being.
Bevins has wanted to be a mom since she was 16, but she’‘s worried that all the medications she takes would affect the baby and that being pregnant might take too much of a toll on her body. She also worries about having the energy to care for an infant.
Then there are the daily hardships. She can no longer keep house, and she frets about not being able to cook.
“I hate not being able to have quality food,” she said. She did, however, “swallow her pride” and now uses the electric buggy when shopping for groceries.
Penney Cowan, executive director of the American Chronic Pain Association, who also lives with chronic pain, hopes the survey will help people understand how pain impacts so many lives in so many ways. She also hopes it will persuade more pain sufferers to take an active role in their own treatment.
“Ideally, we want them to begin to make the transition from the mindset of a patient to that of a person who does not allow pain to become their identity so they can eventually cope with it,” she said.
“There is hope,” Bevins added. “You can end up accepting your pain as just another part of you. It’‘s just something that’‘s there. It doesn’‘t mean your dreams have to stop. They may have to be altered.”
Revision date: June 18, 2011
Last revised: by Andrew G. Epstein, M.D.