The Faces of Pain Documentary Portrait Project seeks to use visual storytelling to give a voice to those who suffer and create public awareness. It will give a face to individuals with chronic pain, which poses a significant public health challenge and impacts 40 million Americans.
Each participant will be interviewed to capture their experiences, lessons learned as a way of providing their recommendations for managing persistent pain. Their perspectives will provide context to the images. The photographer will make images of the participants in their environments, using their own words and imagery, and illustrate the complexity of living with pain with a focus that shows their strength, beauty and dignity.
Phase one will be a pilot project. We are looking for 10 participants on the Delmarva Peninsula. The program will be evaluated at the conclusion of the pilot to determine the best approach for leveraging and socializing the content and whether it should be expanded or otherwise enhanced. Initial options for sharing the content may include social media channels, a photographic exhibition, and/or a publication. Each participant will receive an archival print(s) from their photo session.
I know personally I feel invisible, alone and forgotten most days. I think showing the beauty that remains amid such debilitating and destructive agony has such depth and character, we are all so much stronger than the average human, so much stronger than we feel most days. I know for a fact I no longer feel beautiful most days … I think you could show the beauty and strength and honor that people that fight our fight every minute of every day have…it would be magical.
Chronic Pain Support Group Participant
Putting a face to our pain will help people see how just because we look like nothing is wrong, our bodies are betraying us. I feel it would be therapeutic and they would be seen and also finally heard. It would be refreshing for people to understand. I think your idea could enlighten many people to what we go through.
Chronic Pain Support Group Participant
Background
Increasing public awareness and combating stigmatization was a key finding by the Institute of Medicine’s (IOM) 2011 report, Relieving Pain in America, which was contracted by the National Institute of Health to study and make recommendations to “increase the recognition of pain as a significant public health problem in the United States.”
Education, Education, Education. Educate more physicians on proper diagnosis and proper pain management. Educate the person living with pain and their family on addiction versus physical dependency and proper storage of medication. Educate the public and press about the realities of pain medication and people living with pain.
Anonymous Respondent, 2011 IOM Report
Since the IOM report’s publication, the Department of Health and Human Services (HHS) asked the Interagency Pain Research Coordinating Committee (IPRCC) to oversee creation of a National Pain Strategy (NPS) which was published in 2016.
While the NPS report is multifaceted, there is a clear focus on building public awareness, educating patients and medical professionals. With the objective to decrease the prevalence of pain and the impact to patients and society, the report envisions an environment where “Americans would recognize chronic pain as a complex disease and a threat to public health and productivity. Individuals who live with chronic pain would be viewed and treated with compassion and respect.”
According to the 2011 IOM report, pain is a public health problem impacting 100 million Americans and costing society $560 – $635 billion annually. According to a report in the Journal of Pain, Prevalence and Profile of High-Impact Chronic Pain in the United States, High-Impact Chronic Pain, where pain lasts more than 3 months and generally associated with at least one major activity restriction (such as working outside the home), accounts for 4.8% of the U.S. population (10.6 million). Additionally, 13.6% (29.9 million) Americans experience chronic pain without activity limitations.
People with HICP are more likely to be unable to work for a living and one-third had difficulty with self-care. They are also more likely to have higher levels of anxiety, depression, fatigue and cognitive difficulty. They report more severe pain, worse health, and higher use of the medical system. Adding to the challenge is an opioid crisis where 47,600 people died of overdoses in 2017, up significantly from 18,515 deaths in 2007. While the majority of patients do not experience addiction to opiates/opioids (74-96% do not according to NPS), the dramatic increase in prescriptions, illegal use of synthetic opioids, and resulting overdoses and deaths has prompted the government and health system to rethink the use of these medications. This is creating new stigmatization for patients who a) may rely and benefit from these medications and b) struggle with stigmatization as is discussed in the National Pain Strategy. This conflict creates more stress and anxiety for those who suffer from chronic pain which in turn can worsen their pain.
Photo Session Approach
Each photo session will include several components to incorporate context and the voice of the participant who lives with pain. It will include elements of market research, fine art concepts, documentary, and portraiture.
Interview – each participant will be asked to share their experience through a short guided interview of prepared questions. This information will be used by the photographer to determine the best approach to make the portraits. It also may be used to write a brief summary of the participant for use in socializing, presenting, and publishing the imagery.
Face of Pain Illustration and Environmental Portrait – each participant will be asked to draw on a canvas a face that represent their pain. This will be similar to the Faces of Pain Scale that is seen in a doctors office however they will be encouraged to personalize their images. This illustration process will also be documented by the photographer. Once the Face of Pain illustration has been completed, the photographer will incorporate it into an environmental portrait. The participant will be asked to pose in a way that expresses how they want people to see them, whereas the illustration will convey how they feel.
Additional Environmental Portraits – each participant may be asked to pose in different settings to generate variety. These portraits would not include the Face of Pain illustration. They may be half-length (waist up) or headshots.
Benefits to Participation
Pain is personal and while living with chronic pain is as complex as the underlying causes, there are commonalities to the experiences. Creating awareness of these commonalities may help to reduce the stigmatization that can lead to poor diagnosis/outcomes and misunderstanding of the physiological and psychological impacts of pain. How many times has a person living with pain said to friends and family … “I just want to be heard”? Instead, they often feel isolated, lonely, and despondent. It is the hope that participants in this project will find the process to be therapeutic by giving them an opportunity to express and share their experience. We also hope that there is a positive cultural impact that may lead to more support, better care and improved outcomes. From this perspective, participants will be playing a key role in telling the story of the millions of people who live with pain every day. They effectively will be putting a face to the experience and help to bring about positive change in how our society perceives and treats people with pain.
About the Photographer
Andy Gordon comes to photography following a successful career as a printing industry consultant and strategist. He received formal training at the College of Imaging Arts and Sciences at the Rochester Institute of Technology where he earned a Bachelor’s of Art degree in Photojournalism and a Masters of Science in Printing Technology.
In 2013, he returned to photography with a renewed passion. Coping with debilitating back pain, he found photography an exercise in mindfulness which enabled him to focus through the fog of disability, enhanced the satisfaction of observation, and led to new critical awareness. Gordon has won awards for his photographs, lectured on his techniques and the creative process, and has shown his work in multiple solo shows.
