We strive to make visible the internal, often hidden challenges faced by those with chronic pain. We want to show what it’s like to live with pain—to thrive in spite of it. The project includes profiles of individuals, with photos of them on their best days… and in their darkest moments. Our goal: To show the reality of life with pain, and to offer hope and inspiration to the millions like us.
The INvisible Project and the U.S. Pain Foundation: A natural fit. When Paul Gileno met Nicole Hemmenway in 2010, both were relatively new to activism. Paul had been slowly growing the organization that would become U.S. Pain Foundation, having started it at the local level in Connecticut. Nicole had just written a book describing her journey living with chronic pain. Speaking with the authority that came from telling her story, Nicole felt certain others would also benefit if they had an avenue to share their stories as well.
However, Paul and Nicole recognized that their journeys were difficult to describe in words. And they knew many others who felt the same way—in fact, some fellow pain patients could sometimes barely find the strength to explain how they were feeling. One look at their faces, though, and the pain was obvious.
MAKING THE INVISIBLE VISIBLE
The two put their heads together and decided to partner with a fellow pain patient who was a professional photographer to create a project that would bring public visibility to the invisible, internal struggles of people living with chronic pain. That first year, nine people were featured in a magazine-style publication, with profiles by Nicole and professional photos, taken on a day in the life of each person.
But Nicole and Paul weren’t satisfied. “We realized that explaining a day in the life of a pain patient through images would necessitate more than a beautiful headshot—more than the edited perspective of a professional photographer’s lens,” says Nicole. “We needed to show the rough spots, the hospital visits and sleepless nights, to really put a face to what a person with chronic pain experiences daily.”
SOMETHING THEY CAN HOLD
Thus was born the current version of the INvisible Project magazine, with thousands of copies distributed to patients, caregivers, and health care providers. This publication highlights stories and photos from real patients about their day-to-day lives.
“A magazine is an easy way to make sure people can access the project, return to it frequently for information and inspiration, and share it with others,” says Nicole. “When people have something they can hold, it feels more real, more reliable, and it can be a strong source of hope.”
BARING THE TRUTH
During the past few years, patients featured in the project have shared their stories—the good, the bad, and the ugly. People like Dennis Kinch—who in 2005-2006 walked the entire 2,400 miles of Route 66 to raise awareness about chronic pain while living with Paget’s disease and ankylosing spondylitis—shared intimate details of their pain experience in order to help others. “Chronic pain has given me the opportunity to complete the greatest challenge of my life: staying genuinely happy despite constant pain,” says Dennis. “I now live by the motto: Do what you can when you can. My time may be limited but I am making every day count. I am grateful for the gifts in my life—no matter how small.”
Stories like Dennis’ serve to inspire others with pain to share their stories, and that’s why the INvisible Project is an essential component of our programming.
INvisible ON THE ROAD
The U.S. Pain Foundation also offers traveling displays in a few different sizes for those who wish to hold awareness events. The photo displays are lightweight and easy to install, and they provide excellent visual impact at pain awareness events, disability expos, health fairs, medical conferences, and other public events. Several Pain Ambassadors for the U.S. Pain Foundation have taken the displays to state legislatures, using the opportunity to educate lawmakers as they consider legislation that affects access to health care and veteran issues.
WANT TO PARTICIPATE?
Do you want to share your story, to educate and inspire others? To put a face to the otherwise invisible challenges you face as a chronic pain patient? We welcome your ideas, and we’re looking for candidates for the next edition of the INvisible Project magazine. Introduce yourself HERE
U.S. Pain Foundation Programs
As an organization serving tens of thousands of people with pain, we strive to offer a wide array of programs that help people wherever they are on their pain journey.
Awareness & Advocacy Programs
- Pain Ambassador Network: Volunteer Pain Ambassadors represent the organization in their communities across the country. They help individuals in need, organize educational events, connect with lawmakers to advocate for better health care laws, and more. Pain Ambassadors are the face of the U.S. Pain Foundation. To participate, go to: uspainfoundation.org/get-
- Advocacy Network: The U.S. Pain Foundation is dedicated to making sure people with pain are heard by policymakers at both the state and national level. We strive to improve policy and legislation in the areas of: high-quality treatment; patient safety; fair, accessible insurance coverage; innovation and research; and quality of life. Working each day to make sure people have access to necessary treatment options, we are raising awareness in hopes of ending the stigma associated with pain. To learn more, go to: uspainfoundation.org/advocacy.
- Medical Cannabis: U.S. Pain offers a designated medical cannabis program led by two expert advocates. The program seeks to increase safe, fair access to medical cannabis for people with chronic pain and provide education and training on medical cannabis as a treatment option. For more information, visit uspainfoundation.org/
- Pain Awareness Month: During September, Pain Awareness Month, U.S. Pain hosts a number of activities, events, and campaigns to both empower and educate pain warriors and to increase awareness and empathy in the general public. Efforts included obtaining state proclamations; lighting up local landmarks and decorating local buildings in blue; op-ed drives; and more. To learn more, visit: uspainawarenessmonth.com.
- People with Pain Matter: People with Pain Matter is a national program designed to raise public awareness of the impact of chronic pain on the lives of nearly 100 million Americans. The goal is to encourage policymakers, members of the media, and other stakeholders to recognize the needs of people with chronic pain and to enact public policy that better supports the pain community. Get involved today: peoplewithpainmatter.org.
- Pain Warrior Bracelets: Our rainbow of colors represents all the many different conditions that cause pain. The bracelet itself is a constant reminder that we are strong, that we are warriors in the fight against pain. We rise above the idea of “suffering” and instead strive in spite of pain—and our bracelets help educate those around us. Get your bracelet at uspainfoundation.org.
- Learn About Your Pain: This website is designed for the newly diagnosed who are looking for concrete, credible information. Browse the directory of pain conditions to learn more and gather resources. Start learning today: learnaboutyourpain.com.
- Pain Medicine 411: This website shares credible information regarding medications. Discussing the risks and benefits involved with prescription drugs, Pain Medicine 411 empowers patients to make informed decisions about their personal treatment program. Learn more: painmedicine411.org.
- Take Control of Your Pain: These daylong seminars for patients offer the chance to share their perspectives with others who have had similar experiences. We also invite health care providers to discuss the latest advances in pain management and complementary therapies. Find out about the next event: uspainfoundation.org/tcoyp.
- National Coalition of Chronic Pain Providers and Professionals (NCCPPP): This network of health providers, professionals, and organizations has come together in a coalition to more efficiently and effectively serve the chronic pain community. To become involved: nccppp.org.
- Pain Connection: Pain Connection helps individuals with chronic pain by empowering them to connect with other pain warriors and develop strategies for coping. It offers in-person support groups, live conference calls, military outreach, and support group leader trainings, so people with chronic pain and their families gain the support they need. For more information: painconnection.org.
- Pediatric Pain Warriors: The Pediatric Pain Warriors program assists children and their families in finding a network of support and community. This program offers scholarships to a special camp, dedicated resources, and works to advance research for pediatric patients. To find help, visit: uspainfoundation.org/
- Veterans In Pain: U.S. Pain Foundation is proud of our American heroes. It is of the utmost importance that our veterans receive the proper care, benefits, and support they deserve and need. We partner with Wings for Warriors (wingsforwarriors.org) to support combat-wounded military service members. Additionally, our new Veterans in Pain program offers emotional support and help to veterans and military members. To get started:uspainfoundation.org/veterans.