He had sickle cell anemia diagnosed when he was six months old and since then, the evil, crescent-shaped cells have sent him into crisis many times and left him wracked by chronic pain.

Soon, every month brought a sickle cell crisis, when it had previously happened just three or four times a year. Each time, the hospital would become his home for two weeks. The severe pain would strike quickly, hitting with little warning other than a slight loss of appetite.

“We've all had pain. We believe we know what it is is. But you probably didn't have chronic (non-cancerous) pain, which we know is a disease of the nervous system,” says Dr. Ellen Thompson, an anesthetist at the Ottawa Hospital who's treated chronic pain from more than 25 years.

In 2001, Dr. Dwight Moulin of the University of Western Ontario's Interdisciplinary Pain Program surveyed 2,012 Canadians and found 29% (27% males, 31% females) reported experiencing chronic pain for at least six months. The prevalence peaked at 39% in those over the age of 55. The average duration of pain was 10.7 years.

It's estimated that 80% of doctor visits result from pain. Some global studies have reported chronic pain rates as high as 46%. In Canada, 17% to 31% of adults suffer from it, depending on the study.

Most chronic pain patients look perfectly healthy, with no real evidence they're suffering. So not only is it lacking in sex appeal, it's largely an invisible disability.

And that has caused him grief. He's had people accuse him of faking his illness, of using it as an excuse when he doesn't want to do something. And it's not just insensitive classmates he's had to contend with.

His old, close friends have come to accept his limitations, which keep all physical sports off limits. “I only play golf,” Charles says with a grin.

In 2003, he also learned the sickle cells had led him to develop a severe case of osteoporosis. Then 14, he started receiving full blood transfusions to clear his system of sickle cells every five weeks.

He's in crisis far less often now. The last time it reared its ugly head was in March. The crisis lasted for 10 days and caused his lung to collapse for the fourth time.

Less crisis means less pain, but it's far from gone. Sickle cells have left their mark on his back and knees. Walking up stairs is a challenge. As Charles sits on the couch, he shifts often. The dull pain is ever-present in his back. And while he can live without heavy doses of morphine these days, he still requires methadone when it gets to be too much.

There are few studies reporting the cost of chronic pain, but the Chronic Pain Association of Canada estimates the cost of chronic pain to the Canadian economy is $10 billion a year.

A study published in the Journal of the American Medical Association in November 2003 reported chronic pain cost $62 billion in reduced performance each year in the U.S. That climbed to $100 billion when lost time and health-care costs were factored in.

“It hits individuals in the most productive years of their lives,” says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital.

In 2001, Dr. Dwight Moulin of the University of Western Ontario Interdisciplinary Pain Program surveyed 340 people living with chronic pain and found the mean number of days pain left people unable to work in the last year was 9.3, but for those with severe pain, it rose to 16.

In the beginning, when she was able to get back to work, she pushed herself hard to perform as she always had. It took several crashes to learn she was doing more harm than good.

After taking five years to get her three-year degree, she landed a job as a federal government database technician. She only missed about a day a month.

That changed in November 2001 when a stress-fuelled flare-up of full-blown pain and fatigue forced her home. Her doctor urged her back as quickly as possible, so three weeks later she was working part-time. But she couldn't concentrate, she couldn't plan. Exhausted, her brain was in a fog.

“My biggest problem was reading. I do computer programming but I couldn't even read the manuals, let alone work out the logic of what I was doing,” Jessop says.

Ten years ago, a review of long-term disability claims by London Life of Canada found that in 1994 alone private insurance companies paid out $46 million in fibromyalgia claims, $27 million for chronic fatigue claims and $30 million for repetitive strain injury claims.

When off sick or working part time, Jessop's salary is topped up by her long-term disability benefits. It's a financial relief, but she had to fight for it.

She finally won and while her insurance company won't say why, she figures it was a report from her occupational therapist who'd spent weeks with her that convinced them.

In 2003, the Supreme Court of Canada ruled that excluding those disabled by chronic pain from workers' compensation granted to others breached the equality rights of the Charter of Rights.

The ruling struck down a section of the Nova Scotia Workers' Compensation Act, which gave those disabled by chronic pain just four weeks of limited benefits, denying them the usual benefits other injured workers had access to.

There is a shortage of comprehensive, interdisciplinary pain clinics — and among those that do exist, the waiting list can run as long as three years.

Dr. John Loeser, professor of neurological surgery at the University of Washington, agrees there is no shortage of doctors who feel if they can't find some broken part to explain pain, the person must be faking or psychiatrically ill.

Also wrong is the idea that the physical being can be separated from the psychological, says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital.

TREATMENT: Topical painkillers, anti-depressants, and opioids. Physical therapy, sympathetic nerve block, or spinal cord stimulation are other approaches.

DEFINITION: Widespread pain and musculoskeletal tenderness. The majority of sufferers (90%) are women, the disease diagnosed in their 40s and 50s.

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