From Patient to Person
Starting from one support group 23 years ago, the ACPA now has more than 400 active groups worldwide
By Debra Nelson-Hogan

"You are only a patient when you are at the doctor's office," says Penney Cowan, Executive Director of the American Chronic Pain Association (ACPA), an organization dedicated to helping members rebuild their lives. When a person suffers from chronic pain, one of the aspects of his or her life that typically needs rebuilding is a sense of self and self-esteem. Often, physicians don't know how to effectively manage pain, so the patient feels guilty, or afraid. Many negative stereotypes depict a person in pain as a whiner, or complainer. The ACPA offers many tools to empower individuals to take responsibility for their lives and particularly their health care management.

Cowan knows. After suffering chronic pain for more than six years, she went to the Cleveland Clinic Pain Program 23 years ago. She was there for seven weeks-unheard of in today's managed care environment-and began to learn to live with her pain.

"I went into the pain management program as a patient, but left it as a person. For the six years before I went into the program, I felt alone and isolated no one understood my situation," Cowan says. After the program, she returned to Pittsburgh, afraid that what she had learned at the clinic would be lost. "Not only the skills, but the validation in knowing my pain was real and I was not alone," she says. Although Cowan has never been to a support group before, she started one in her church. She was not out to reach the masses, she explains, but to help just one person.

"When you are living with pain, you feel no one cares and you become insignificant. In our groups, we emphasize that each person is as important as anyone else," she says.

Regardless, the masses responded. Soon she was managing seven support groups for people in chronic pain, and found one of her greatest skills was the ability to discover the variety of resources available. "I've never been afraid to say that I don't know something, but am always willing to find out. I put together a huge bag of materials, from which the first manual was born," she adds.

The ACPA was born to "provided a support system for those suffering with chronic pain through education and self-help group activities." The goal is to get members out of the patient role and back to being a person. ACPA accomplishes this through the support group network and its educational tools. "Once I expanded to seven groups, I realized that I couldn't lead all of them; I needed to train some facilitators. The group facilitators are all people in pain, and are supported by regional directors," she notes.

Cowan has written a book called From Patient to Person: First Steps, which is a workbook for people in chronic pain (also available as a video). A 1200-page member workbook designed to help anyone who has a chronic pain problems gain a better understanding of what pain can do to one's life and how to begin regaining personal control. The organization also has a quarterly newsletter, The ACPA Chronicle, written for and about ACPA members.

She also wrote a manual for family members, since they are controlled by the pain and can become isolated and frustrated as well. More importantly, she adds, "Sometimes a person affected by pain learns to manage it, but then the family will still treat her or him as disabled."

The ACPA groups are not complaint sessions-they focus on discovering what people can still do. Assertiveness is also stressed. "Everyone has rights. We teach empowerment, sleep hygiene methods. People need to be responsible for their health. Wellness care is essential. And we always focus on abilities rather than disabilities.

Currently the ACPA has more than 400 active support groups, both nationally and internationally. The ACPA is funded through donations, some grants and member dues. "It's amazing how much we've grown considering the little money we have," she says.

One of these amazing things is spearheading the Partners for Understanding Pain, a consortium of 45 groups (including RDSA) to have come together to raise awareness of pain among the community at large. The partners will work to build understanding that pain is a serious public health issues. They will target health care professionals, legislators, business people, individuals with pain and their families. "Pain touches all aspects of society," Cowan said.

For more information on the American Chronic Pain Society, visit www.theacpa.org or call 916-632-0922; toll-free 800-533-3231.

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