SACO — Living with chronic pain can be a lifelong ordeal that is isolating, agonizing and demoralizing. Understanding the challenges a person with chronic pain faces can be difficult for others – even health care professionals – to achieve because pain is so subjective and each individual experiences it differently.

For too long, people have been told by unbelieving medical professionals that pain is imaginary or a mental condition. Legislators have discounted patients’ need for medication to control pain at tolerable levels. Society as a whole has ignored the need for more research (and more funding) to discover ways to help the millions who suffer with chronic pain to live better lives.

Fortunately, the University of New England is tackling the difficult assignment of understanding chronic pain and making strides I never believed possible when I began my own pain journey more than 20 years ago.

One major goal of UNE’s work – and the light at the end of the tunnel for people living with pain – is to develop teams of health care professionals who understand pain and its effect on a person’s well-being and who work together with their patients to treat all aspects of the problem.

My own ordeal began when my shoulder and both knees began to swell and throb. My doctor told me I was just getting older – at age 40.

I consumed a dozen aspirin a day, trying to contain the pain, which spread to joints throughout my body. It became increasingly difficult for me to do even the simplest daily tasks. My doctor took a wait-and-see attitude.

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None of the other medical professionals I saw during this time provided any help until an alert and knowledgeable physical therapist suggested I get tested for rheumatoid arthritis. A Portland rheumatologist confirmed the diagnosis. Under his care I began treatment, which eventually put me into remission.

During this time, a homeless man saw me wince as I struggled to get out of my car, my inflamed knee buckling under my weight. Looking into my eyes, he said gently, “Your knee hurts. I hope it gets better soon.” Then he walked on. Those simple words changed my life.

Although my husband and my son were incredibly supportive, no one until then had grasped the depths of my pain. Yet here was this stranger, a man who had his own pain and his own troubles, reaching out to me. He understood! A wave of gratitude swept over me.

At that moment, I realized I had to find other people who also understood. His words inspired me to found a support group for people with chronic pain.

The Chronic Pain Support Group of Southern Maine held its first meeting in August 1993. I facilitated the group for 15 years, turning over its operation to a very capable member of the group, Ernest Merritt, in 2008.

During group meetings, we talk about our challenges, laugh at our limitations and sometimes cry over our losses. Unfortunately, most of the members, like me, have faced unbelieving doctors who have discounted their pain and told them, “It’s all in your head.”

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That’s why we gratefully and wholeheartedly agreed to participate in the University of New England’s pain initiative and campaign to research pain and educate its students – from doctors to social workers to dentists to occupational and physical therapists – in the treatment of pain. Students not only study (and develop) the latest research but also interact with people living with pain to learn how it affects their lives.

Since 2012, UNE undergraduate and graduate students have attended our support group meetings to observe and learn from members firsthand about the experience of living with chronic pain. They take their lessons back to the classroom and share their insights with teachers and other students.

Under the leadership of Dr. Edward Bilsky, vice president for research and scholarship at UNE, these students are conducting groundbreaking research in the care and treatment of people with chronic pain. (Bilsky is founding director of the Center for Excellence in the Neurosciences and co-director of the Center of Biomedical Research Excellence for the Study of Pain and Sensory Function at UNE.)

We are so fortunate to have UNE lead the way toward a better tomorrow for people living with pain. It will make a tremendous difference in the quality of care for us all.


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