In pain, you’re not alone
The INvisible Project and the U.S. Pain Foundation: A natural fit.
In 2010, Nicole Hemmenway was relatively new to activism. She had just written a book describing her journey living with chronic pain and was searching for more ways to become involved with the pain community. Nicole felt certain others would also benefit if they had an avenue to share their stories, too.
However, she recognized that the pain journey was often difficult to describe in words. And she knew she wasn’t alone in feeling this way! Many others 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
It was while attending a pain summit that Nicole connected with a small organization that would later evolve to become the U.S. Pain Foundation. Putting their heads together, Nicole partnered with a fellow person with pain 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 wasn’t satisfied. “We realized that explaining a day in the life of a person with pain 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 hundreds of thousands of copies distributed to patients, caregivers, and health care providers. This publication highlights stories and photos from real people 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, individuals featured in the project have shared their stories—the good, the bad, and the ugly. Individuals like Chloe Vruno, who began experiencing migraine attacks three years ago at the age of 15, and is now learning to live with pain and find a way forward. “There have been many times on my journey when I wanted to give up, stop looking for cures, stop taking my medicine, and stay in bed the rest of my life and sulk. But that is no way to live,” says Chloe. “We are still amazing people with the potential to live an amazing life.”
Stories like Chloe’s serve to inspire others with pain to share their stories, and that’s why the INvisible Project is an essential component of our programming. (For a copy of the second migraine edition that includes Chloe’s story, head to INvisibleProject.org.)
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.
Learn more and introduce yourself at INvisibleProject.org.
U.S. Pain Foundation Programs
U.S. Pain Foundation offers an array of free programs that help people wherever they are on their pain journey.
Awareness & Advocacy
INvisible Project – Striving to make the invisible struggles of pain visible, the INvisible Project is a print magazine that highlights the bravery and perseverance of pain warriors through stories and photos. This powerful campaign offers hope and inspiration while demonstrating why people with pain deserve more help, treatment options, and research. Learn more at: invisibleproject.org.
Advocacy Program – 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 work 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. To learn more, go to: uspainfoundation.org/advocacy.
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.
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 uspainmedicalcannabis.org.
Support
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 Warrior – The Pediatric Pain Warrior program assists children and their families in finding a network of support and community. This program offers weekend retreats, scholarships to a special camp, webinars, a pen pal program, and more. To find help, visit: pediatricpainwarrior.org.
Empowerment
Pain Ambassador Network – Pain ambassadors are volunteers who work to raise societal awareness about chronic pain, educate the pain community on available resources, and advocate for change at the state and federal levels of government. Pain ambassadors are the face of the U.S. Pain Foundation and represent the organization across the country. Each year, an ambassador who went above and beyond in advocating for the pain community is selected as the recipient of the Joselynn Badman Ambassador of the Year Award. To participate, go to: uspainfoundation.org/get-involved.
Pain Warrior Bracelet – 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: uspainfoundation.org.
Share Your Story – U.S. Pain invites people with pain to share their stories online. Each person who submits details about their pain journey receives a packet of information and resources, along with a pain warrior bracelet, in the mail.
Education
Take Control of Your Pain – These free, daylong seminars offer the chance for patients to learn about the latest advances in treatment, research, and other helpful resources. At the same time, attendees can share their perspectives with others who have had similar experiences. Find out about the next event: uspainfoundation.org/tcoyp.
Learn About Your Pain – This website is designed for anyone looking for concrete, credible information about their condition. Browse the directory of pain conditions to learn more and gather resources. Start learning today: learnaboutyourpain.com.
Pain Medicine 411 – This website shares helpful, straightforward information about medication safety. Discussing the risks and benefits involved with prescription drugs, Pain Medicine 411 empowers patients to make informed decisions about their treatment program. Learn more: painmedicine411.org.
Webinars – U.S. Pain offers hour-long educational webinars featuring renowned experts on topics ranging from meditation to clinical trials. These webinars are presented live and recorded so they can be watched at any time. To register for a webinar, visit: uspainfoundation.org/webinars.
Clinicians
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.
Want to borrow some traveling displays for an awareness event? Contact the U.S. Pain Foundation. We make it easy for you to have access to powerful materials.
