By Edward Bilsky, Ph.D.
Making the invisible visible.
Having experienced little pain, myself, it is impossible to fully comprehend what it is like to live with severe chronic pain. My work as a research scientist studying the basic biology of pain and opioids for almost three decades has not shed much light on the challenges faced by people in pain.
I have read plenty of clinical papers and spoken with countless physicians and other health care practitioners about this topic, but to be honest these efforts barely scratch the surface. It has taken self-realization, reflection, and a willingness to come out of my own comfort zone to peel back a layered and nuanced veil and peek inside.
Beginning to see pain
It was a little over three years ago that I received the first of many emails and calls from people affected by chronic pain. The award of our new pain grant was well-publicized, resulting in a number of inquiries from people desperate for pain relief. They wanted to enroll in our clinical trial of a new pain medication that did not yet exist (our work was focused at the pre-clinical level).
I had a choice. The simple option was to ignore the queries or politely respond that we were not conducting clinical trials. But, realizing that in almost 30 years of education and research, I had yet to have a meaningful conversation with a person in chronic pain, I made a commitment to respond to each person who reached out to me, asking them if I could meet in person and learn about their pain and its impact on their lives.
What could I offer to help?
The anticipation of meeting these individuals in person was nerve-racking. What would they be like? What would they ask for? How would the conversation go? What could I actually offer in terms of help?
The answers came quick enough. Some walked through the door with canes, walkers, and limps, while others were the epitome of “invisible” pain, with powerful strides, firm handshakes, and no apparent distress on the outside. Each had a unique story, but they also shared many commonalities in their narratives. And with each new introduction and listening session, I became more convinced that meeting them all was one of the best decisions I had ever made.
A profound impact
These initial encounters have had a profound impact on my life, and on many others at the University of New England. We have formed deep and meaningful partnerships with the Chronic Pain Support Group of Southern Maine and the U.S. Pain Foundation. I have learned about the INvisible Project and the important work it is doing by bringing the faces and voices of pain into discussions with policy makers, health care providers, and scientists.
Through advocacy efforts, people in our communities who experience significant chronic pain are candidly sharing their experiences with our students—the next generation of health care providers and researchers. We are collecting stories and creating video narratives of complex pain states, examining each case from numerous angles to get a more complete picture.
This work is being disseminated well past our own communities in an effort to de-stigmatize and de-mystify chronic pain. A group of us are also working with pain warriors (policy advocates who themselves have chronic pain) to be more effective advocates for improving prevention and management options for chronic pain. We are using photography, videography, narrative medicine, art, music, and other techniques and disciplines to complement our efforts in the laboratory and clinic.
Professional meets personal
The greatest irony in all this effort is that the impact of chronic pain was staring me in the face for the past 40 years. My mother fractured her hip when I was a young boy and had several complications that led to decades of severe chronic pain. The stoicism she displayed, in part due to the stigma of chronic pain and the callousness of our society, led to a tangled downward spiral of isolation, anxiety, depression, and silent suffering.
As a child, I was not sensitive enough to pick up on the signs; I sometimes ignored them as life got busier and more complex. I learned much more about my mother’s story when she and my father (who now also has chronic pain) spoke to 175 first-year medical students. Their first-hand accounts of the effect of pain on themselves and their family were revealing.
They’ve experienced moments when the health care system failed them, and moments when a single individual acted to make their situation better. Their stories and countless others drive my newfound passion to make the invisible visible.
About Edward Bilsky, Ph.D.
Dr. Edward Bilsky is Vice President for Research and Scholarship at the University of New England. He received a Ph.D. in Pharmacology and Toxicology from the University of Arizona Colleges of Medicine and Pharmacy in 1996. Dr. Bilsky’s laboratory conducts translational research in the areas of pain and addiction. He has received more than $6 million in extramural funding to his laboratory and has published more than 75 peer-reviewed publications in leading journals, presenting nationally and internationally in a variety of different venues. He was awarded the 2011 American Osteopathic Association Research Mentor of the Year Award, is a recipient of the Faculty for Undergraduate Neuroscience Lifetime Achievement Award, and the 2014 Patient Advocacy Award from the American Academy of Pain Medicine.
“The INvisible Project provides another example of how working with people who face adversity to tell their stories helps to better educate future health care professionals.” – Edward Bilsky, Ph.D.
“Each patient’s story has unique pearls of wisdom; meanwhile, there are also many common threads that connect them all.” – Edward Bilsky, Ph.D.
Dr. Bilsky is a firm believer in the power of art to both reduce pain and to tell powerful pain stories. Over the years, he has collected artworks from patients, some of which are displayed here.