A little health from my friends

After developing a crippling disease, this woman felt isolated. She had to reconnect with others before she could start healing herself.

"It felt like a severe sunburn inside my muscles," says Kathleen Gardiser, describing her disease. "There have been weeks when my arms were so painful, I couldn't bend them to wash my face or hair. Even when I applied ice, the burning was still there."

Fifteen years ago, Kathleen led a very busy life. She was a corporate librarian at a major bank in San Francisco. She skied, belonged to a sailing club, swam twice a week, had a new boyfriend, and was an active fund raiser for the junior Chamber of Commerce.

"Almost every night was scheduled with some kind of activity," she recalls.

Then, at age 29, the dominoes began to fall. First she injured her ankle while jogging one day. Then after two months on crutches, she felt unexplainable pain, burning, and stiffness in her back and left buttock. It was so severe she was unable to work. She sought help from a chiropractor, an acupuncturist, an orthopedist and a physical therapist. After ten weeks of treatment, she returned to work, but only for a few months. More pain had developed, this time in her arms. It was so intense she had difficulty bending her elbows to feed herself, and for three weeks she ate mostly by drinking Instant Breakfast through a straw.

Kathleen had fibromyalgia syndrome (FMS). Typical of this baffling disease, the mysterious pain continued. She couldn't sit for more than a few minutes at a time, and she had to sleep on her stomach on a dozen pillows strategically placed to hold her in a pain-free position.

In the fourteen years that followed, Kathleen's life took strange and unexpected turns, starting with her search for a cure from both conventional and alternative doctors. Neither could offer solutions. If Kathleen had been told at that point that she would never be fully cured, that her pain would continue for years, that she would remain out of work, she might have considered doing what one woman with this disease did--ask Jack Kevorkian to help her end her life. But despite all the pain and limitations she continues to face from her disease, she has never fallen into despair. Quite the opposite.

In the Beginning

Kathleen discovered firsthand that FMS does not fit neatly into any of conventional or alternative medicine's molds (see "The Mystery of Fibromyalgia"). She endured countless rounds of misdiagnoses and neglect by bewildered health care providers. More than once it was suggested that her symptoms were psychosomatic. During one of her flare-ups, she told her physician that she believed her legs and arms must be injured. After observing her walk down the hall, he concluded that nothing was wrong because she walked normally. He referred her to a psychotherapist.

Hoping psychotherapy would help, Kathleen embarked on a four-year tour of personal growth programs. One of her therapists suggested she was repressing her emotions and that this was causing her many symptoms. Kathleen followed her counselor's suggestions and began to look critically at how she handled her feelings.

"I became hyperaware of my emotions," she recalls. "I went through a lot of emotional catharses, which did seem to help my pain, so I figured `This must be it.'"

This theory took a dive, however, shortly after one of her many attempts to return to work. That's when the muscles of her lower back suddenly and inexplicably began to bum and stiffen again.

"It felt like energy was trying to burst through my back, but I couldn't attribute it to anything I had done or to emotional stress. I really searched, though: `Who am I upset with? What am I stressed out about? How did this happen?' There was just nothing I could pin it on. My back just flared up, and there was nothing I could find that I had to `release.'"

What's worse, the psychotherapy played right into Kathleen's life-long tendency to blame herself whenever something went wrong.

"Whenever I had a flare-up, I'd try to figure out what I'd done to cause it, and vow never to do that again," she says. "Eventually the blame became worse than the pain."

Working Through the Pain

I first met Kathleen in 1988, five years into her illness. She had decided to join my group mind-body program in Menlo Park, California.

My approach to working with FMS follows several guiding principles. One, I see medicine as a secondary source of help, a complement to what we do for ourselves when faced with a chronic illness. Two, I encourage meditation. And three, perhaps most important, I teach people to let go of the outcome, to accept what has come into their lives. Kathleen and I worked together, and with a larger group, trying to incorporate these principles into her life. We had our work cut out for us.

Often we found ourselves grappling with the new-age, guilt-inducing notion that she was "creating" her disease. I, too, had once been naively sympathetic to this idea, but a decade of working with hundreds of sufferers of fibromyalgia and chronic fatigue syndrome convinced me otherwise. It took several years, but gradually Kathleen realized that she hadn't brought the disease on herself and, for the most part, she had little control over it. This realization allowed her to let herself off the hook.