This is Pain – A Digital Art and Awareness Initiative
A new visual art and public awareness initiative not only gives a face to chronic pain but also aims to remove the stigma around this complex disease.By Angie Drakulich, MA
As the opioid crisis has weighed on the shoulders of both those living with chronic pain and those trying to help them manage that pain, misrepresentation of what chronic pain truly involves has increased. BioDelivery Sciences International (BDSI) is trying to change that. Their new public awareness and education campaign, called This is Pain, aims to improve the lives the millions of American adults living with chronic pain. PPM spoke to BDSI about what the campaign will involve in the year ahead.
First and foremost, BDSI aims to improve understanding of chronic pain as disease (not a symptom) that affects the whole person and to increase access to safe and effective treatment options for chronic pain management. While BDSI does manufacture three leading pain management products, including the partial opioid agonist buprenorphine (see a clinical article on this treatment option) and an opioid dependence drug, CEO Herm Cukier says the company is not pushing one particular treatment option. In fact, he says, “People in pain are facing a number of obstacles to effectively access and partner with their providers for appropriate treatment. We want to provide more access to a full range of treatment options—to all types of treatments.”
Additional goals of the campaign include increasing research funding for the improvement and innovation of pain therapies and urging fairer treatment and representation in the workplace for those living with chronic conditions. Says Cukier, “Because of the opioid crisis, there has been a misrepresentation of who pain patients are and what they are going through. They have lost their voice in the conversation about their own conditions. We want to remove this misinformation and stigma for them and for those it impacts—families, employers, and communities. This is Pain hopes to provide a platform to change things moving forward.”You may be interested in these related articles:
Penney Cowan, founder and CEO of the nonprofit American Chronic Pain Association (ACPA), has partnered with BDSI to provide real-life patient perspectives on chronic pain. “So many individuals are afraid to even try to access care right now because of the opioid crisis,” she says. “This campaign will not only demonstrate the reality of their pain but will help others see that pain is real and that it is a biopsychosocial disease that encompasses the entire person.”
To lift the veil on often-invisible chronic conditions, This is Pain is launching a visual display at New York City’s Oculus Outdoor Plaza – one of the most honored new spaces underlying the World Trade Center. In partnership with artist Trina Merry, the initiative will bring to life the stories of eight individuals who are living with chronic pain. Merry’s pieces – which give a face to the millions of people living with complex conditions like chronic pain through digital body art – will be on display at the Oculus December 12-15, 2019, but you can see a few sneak-peak images here (all images courtesy of This Is Pain: Artwork by Trina Merry).
Says Cowan, with these images, “The public will be able to view pain in a way no one has ever seen before—to see what those living in pain feel on the inside.” Video stories will accompany the artwork. (Editor’s Note: See a related visual art campaign on chronic pain by Justin J. Wee called “How I Hurt” as well as a new documentary on the faces of Ehlers-Danlos Syndrome, EDS.)
Added Cukier, “We were all really struck by courage of these patients to step forward and literally bare themselves to be painted and we hope that they will be an inspiration for others to have courage and to speak up about their pain.” (More on becoming a patient advocate with migraineur Jaime Sanders and civil rights attorney Kate Nicholson.)
In addition, a group of celebrities who live with chronic pain conditions themselves are working with This is Pain to share their journeys and to provide inspiration for functioning with chronic pain. PPM will highlight their role on this site—look for updates next week and throughout 2020.
Mandy Francis, APRN-BC, DNP, who works in interventional medicine in Florida, pointed out that too many individuals in this country “have pain they deal with every day that they hide, all while feeling miserable on the inside.” Thus, the campaign is targeted at not only educating the general public about their lives but also pharmacies, clinicians, and insurance companies. Unfortunately, not all providers fully understand the complexity of chronic pain and without such awareness, they are building obstacles for patients who simply want to be heard and to work toward a better quality of life.
“We want to let patients know that we see them and we are listening to them,” says Dr. Francis. “We want to make them feel comfortable in asking for help—many don’t want to talk about their pain or don’t realize they have been misunderstood in the past,” At the same time, “We want to educate professionals to listen to patients and to better understand what options they have to treat them. It’s a team effort.”
So why launch this campaign now? Says Cukier, “The dynamic of stigma and misinformation around chronic pain has been exacerbated in a negative way the past few years and created a misrepresentation of who patients in pain are and what they’re experiencing. It has negatively impacted their access to treatment. More than ever, now is the time to give these patients their voices back.” Importantly, BDSI urged that This is Pain is not a one-off campaign—the company plans to continue the initiative “until significant improvements are made at a systemic level.”
You can follow the campaign at: www.ThisIsPain.com and on social media platforms @thisispain.Updated on: 02/24/20