Going from Patient to Person: How I Live Fully With Pain
“When you live with chronic pain, it can consume your life, making it seem like your whole existence is defined by your pain. On top of that, much of what you hear about chronic pain in the news is overwhelmingly negative, with stories about pain being associated with opioid abuse and addiction.
But there’s an untold story out there that is painfully familiar to the nearly 100 million people living with pain…
At any moment, you could be walking down the street next to someone who is living with pain and not even know it. Pain is an invisible and unpredictable monster.
People who live with it may have good days and bad days. So for those who don’t live with pain, the question becomes, “You could do this yesterday, why can’t you do it today?” and that can make people with pain feel misunderstood and put them on the defense.
I know firsthand the frustrations that accompany living with pain. I’ve had chronic pain since 1974, and it took me six years to find a diagnosis. I felt like a 30-year-old trapped in an 80-year-old body, and it was very discouraging. I didn’t fully realize what a huge personal accomplishment it was just learning to live with my pain until after my diagnosis when I took part in a pain management program at the Cleveland Clinic. For the very first time, I knew I wasn’t the only person in the world with this kind of pain. Before going there I isolated and shut myself off from my family and friends. The program taught me how to live with my pain, providing the self-management skills I needed to live a full life in spite of my pain. The validation and support of others who live with pain is a critically important step in learning to live with pain.
I founded The American Chronic Pain Association (ACPA) in 1980 to provide that comfort for people living with pain. When I left my pain management program, I was eager to maintain my wellness and not allow pain to rule my life again. I placed a notice in my church bulletin and quickly found others in similar situations. One support group quickly blossomed into many.
Today, the ACPA organizes several hundred support groups, as well as providing resources and tools to help people manage their pain. We offer communication tools to help people talk to their doctors about pain, lessons from more than 30 years of supporting people with pain and information about chronic pain treatment.
It is possible to live life beyond simply existing with pain. With a balanced approach to pain management that may include medication, but also teaches you to listen to your body, manage stress, pace activities, and understand your emotions, you can live fully. To find tools and resources or connect with others living with pain, visit www.theacpa.org.“
Penney Cowan is the founder and Chief Executive Officer of the American Chronic Pain Association (ACPA). She herself is a person with chronic pain and established the ACPA in 1980 to help others living with the condition. The ACPA provides peer support and education in pain management skills to people with pain and their families. The ACPA also works to build awareness about chronic pain among professionals, decision makers and the general public.