The evolution of the INvisible Project.
In 2010, Nicole Hemmenway was relatively new to patient advocacy. 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 benefit if they had an avenue to share their story, too.
Making the invisible visible
While attending a conference, Nicole connected with a small organization that would later evolve to become the U.S. Pain Foundation. Nicole decided to join forces with U.S. Pain to help amplify the voices and stories of people with pain. That first year, nine people were featured in a magazine-style publication, with profiles by Nicole and photos taken on a day in the life of each person.
Celebrating 10 years
Today, the INvisible Project has published a total of 17 issues (including this edition) and distributed an estimated 100,000 copies to patients, caregivers, and health care providers.
Nearly 200 patients and their loved ones have been featured over the years. In addition to individual stories, each issue includes roughly a dozen educational articles from experts on topics that matter most to patients with pain.
“We have an online version as well, but we continue to believe in the power of a printed publication,” says Nicole. “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.”
INvisible Project on the road
Beyond print and online editions, the INvisible Project is also available as a traveling display in a few different sizes for those who wish to hold awareness events. The photo displays are lightweight and easy to set up, but they have a huge impact at pain awareness events, disability expos, health fairs, medical conferences, and other public events.
U.S. Pain Foundation has even taken the displays to state legislatures, using the opportunity to educate lawmakers as they consider legislation that affects the pain community.
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
HERE ARE SOME OF THE PROGRAMS THE ORGANIZATION OFFERS.
AWARENESS & ADVOCACY
Advocacy Program – Pain warriors deserve direct and affordable access to individualized, multidisciplinary care. We fight for change on a range of priority issues related to pain care at the state and federal level. Whether testifying in person, meeting with policymakers, submitting letters, or rallying our volunteers to act, U.S. Pain’s Advocacy Program has a demonstrated track record of success. To start advocating with us, visit:uspainfoundation.org/advocacy.
Pain Ambassador Network – Pain ambassadors are volunteers who work to raise 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. To participate, go to: uspainfoundation.org/ambassadors.
Pain Awareness Month – During September, Pain Awareness Month, U.S. Pain hosts a number of activities, events, and initiatives to both empower and educate pain warriors and to increase awareness about pain in the general public. Efforts include obtaining state proclamations; lighting up local landmarks; decorating local buildings in blue; op-ed drives; and more. Learn more: uspainawarenessmonth.com.
Points for Pain – Created in 2015 by seventh- grader Tyler Cashman, Points for Pain is a unique fundraiser and awareness campaign where sports fans pledge donations based on the number of points their team scores. Tyler started the initiative in honor of his mom, who lives with pain. All proceeds benefit the Pediatric Pain Warrior Program. Learn more: pediatricpainwarrior.org/pointsforpain.
Medical Cannabis – This program is led by two expert patient advocates. The program seeks to increase safe, fair access to medical cannabis for people with chronic pain. It also aims to provide education and resources on medical cannabis as a treatment option. For more information, visit: uspainmedicalcannabis.org.
INvisible Project – The INvisible Project is a print and online magazine that highlights the bravery and perseverance of pain warriors through stories and photos. This powerful campaign offers hope and inspiration while calling attention to the challenges people with chronic pain face on a daily basis. Learn more: invisibleproject.org.
Living with Pain – This dedicated section of the U.S. Pain website, along with a corresponding 16-page print booklet, provides detailed information about how to live day-to-day with chronic pain. The content includes everything from a comprehensive list of treatment options to self-management strategies. Take charge of your pain now: uspainfoundation.org/living-with-pain.
Pain Education Portal (PEP) Talks – 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, from the comfort of home. Find upcoming events: uspainfoundation.org/webinars.
KNOWvember – Each November, this educational campaign takes a closer look at a particular topic through events, social media content, and fun activities for pain warriors. Past topics include pediatric pain and creativity through pain. Learn more: uspainfoundation.org/knowvember.
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 effectively serve the chronic pain community. It offers networking, education, and more. To join, go to: nccppp.org.
SUPPORT & EMPOWERMENT
Pain Connection – A national network of support groups, Pain Connection provides compassionate support and evidence-based education to help people with pain reclaim their quality of life. The support groups, which are offered both in person and over the phone, are led by individuals who receive comprehensive training from a licensed social worker. Find a group near you: painconnection.org.
Pediatric Pain Warrior Program – The Pediatric Pain Warrior Program assists children and their families in finding a network of support and resources. This program offers weekend retreats featuring expert speakers, educational events, a pen pal program, and more. To find help, visit: pediatricpainwarrior.org.
Share Your Story storybank – 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. To share your story today, visit: