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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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