In honor of Disability Pride Month, founding Executive Director of I-CREATE YOUTH Jessica (Jess) Kim interviewed Nicole Hemmenway and her work with Invisible Project, a =n initiative that shows the reality of life with pain and offers hope and inspiration to thrive in spite of it.
Nicole Hemmenway currently serves as CEO of the U.S. Pain Foundation and directs the INvisible Project, an online and print magazine that highlights the experiences of people living with pain. Nicole is also an author and motivational speaker. Her book, No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, details her struggles and triumphs in dealing with complex regional pain syndrome, a debilitating neurological disorder. In September 2015, Nicole was featured in a campaign in USA Today in recognition of her role as an advocate for those living with chronic pain; and in 2017, she received the Unsung Hero Award for her work in the pain community. Nicole lives in the Bay Area with her husband and three young sons.
Nicole, it's wonderful to be interviewing you. To start off, what was your journey like dealing with complex regional pain syndrome?
I personally have lived with pain since 1994. Following an injury at 13, I was diagnosed with a neurological and chronic pain disorder called complex regional pain syndrome (CRPS). Having pain changed the entire course of my life. I was under constant scrutiny by doctors and missed out on key childhood moments, such as attending sports games, going to dances, or hanging out with my peers. I lost mobility in my right hand and had minimal use of my arm; I depended on high doses of pain medication for years and underwent numerous invasive procedures. When my disease was at its worst, I would be confined to a bed or use a wheelchair. By the time I turned 22, most doctors had written me off as being untreatable and incurable.
Over the course of several excruciating years, I was fortunate to find a combination of nonpharmacologic treatments that worked to manage my pain. I know I am one of the lucky ones who had support and access to complementary and integrative treatments—which very few patients have.
After writing a book on chronic pain, you co-founded the INvisible Project to share the stories of people with chronic pain. How did your activism change from a personal to a communal goal and what was the inspiration behind that?
The reason for writing a book detailing my struggles and triumphs navigating the medical system with CRPS and chronic pain was to connect with others. I wanted to be candid and real about the journey—the good and bad—so others going through similar situations did not need to feel alone. Once the book was published, I was fortunate to meet and hear from people living with pain all over the world; they shared the challenges they faced, the lessons they had learned, and their fears and hopes for the future. Each day, I was inspired by the resilience and strength of others. And it is now my continued mission, through my work with the U.S. Pain Foundation, to help and inspire other pain warriors, while advocating for access to proper pain care and treatments.
You've partnered with the U.S. Pain Foundation, which has evolved from being a small organization. Could you tell me a little more about that evolution?
I became involved with the U.S. Pain Foundation in mid-2010 after learning more about the organization and its mission. U.S. Pain was, and is, a patient-driven and patient-led organization. The need for its free programs and services—including a network of support groups, educational resources, and events, a program for children and their families, advocacy efforts, a magazine called the INvisible Project, and more—just kept growing. There was an unmet need in the community, and soon after I joined, the organization expanded from being a smaller nonprofit in Connecticut to have a large national presence. U.S. Pain Foundation is dedicated to improving the lives of people, including kids, living with chronic illnesses and serious injuries that cause pain. And we work tirelessly to provide a community of support, enhance the quality of life for people with pain, improve patient outcomes, address access and affordability issues, and increase public awareness and empathy for the issue of pain.
In its twelfth year, the INvisible Project is more than just a magazine—the magazine and its corresponding photo displays have been showcased at awareness events, medical conferences, and state legislatures. How was this possible?
The INvisible Project started as a program to amplify the voices and stories of people with pain while also showcasing the daily challenges those individuals face. For that first publication, U.S. Pain partnered with a fellow person with pain who was a professional photographer. Nine people were featured in a magazine-style publication, with profiles written by me and professional photos, taken on a day in the life of each person. To create public awareness beyond the printed magazine, all photos of the featured individuals were framed and displayed at different events and medical conferences.
We soon recognized that shipping and setting up a gallery display of framed images weren’t conducive to travel. We also 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. 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.
Thus, the project expanded to include personal photos from real people providing a glimpse into their day-to-day lives. We also moved away from framed photographs to traveling displays, which show images and quotes from those featured in the publication, that are lightweight and easy to install while still providing excellent visual impact at pain awareness events, disability expos, health fairs, medical conferences, state capitols, and other public events.
As the INvisible Project continued to grow in its outreach, we saw a need to publish editions that focused on either a specific disease state, population, or pain management modality. This widened our outreach and allowed each magazine to tailor articles relevant to the issue at hand. So for example, a migraine and headache diseases edition could include an article about how to find a headache specialist. We also could highlight other organizations in that particular space that are doing amazing work and would be a resource to our readers.
Regarding how this incredible program was made possible, that is due to the support of our sponsors, who truly recognize the need for people living with pain to be seen, heard, informed, and understood.
Could you walk us through the editorial process behind the release of each themed issue in the INvisible Project?
Once we have selected a theme for a particular issue, we research article topic ideas and brainstorm disease states that are important to include in our profiles. This is a collaborative process that includes discussions with U.S. Pain staff, key opinion leaders, and individuals who live with pain. We track down experts to interview regarding a variety of topics relevant to the issue’s theme and begin the process of identifying individuals living with pain who are willing to share their stories. We now have a great team of writers who work with us to write all of these articles and a talented designer who puts the final product together. Once the magazine is printed, we host a Facebook Live launch party to introduce it, and promote it in various ways, including by giving copies to doctor’s offices, support groups, and nonprofit organizations to distribute. Our goal is to get this free resource in the hands of as many people as possible.
While browsing through the archive of articles on the website, I was inspired by many of the authors' stories. Whether a previous contributor or not, who is your role model?
That is a great, and extremely hard, question. I know it may seem like I am dodging the question, but I truly believe each person has a unique perspective and a story worth sharing. We, as a society, inspire and empower one another. Listening to others' experiences, and hearing others’ stories, motivates me to keep doing what I am doing. We experience this as if it’s the first time with every new issue of the INvisible Project, as we are introduced to more and more individuals whose stories are so incredibly worthy of telling.
I will say, though, that without the unwavering support and love of my family, I would not be where I am today. They are, without a doubt, my biggest cheerleaders. They believed in me when I felt no one else did, allowing me space to grieve and be angry; but they also showed me how to find grace within the pain and see myself as not defined by my disease.
July is Disability Pride Month. What is something about disability that you want the world to celebrate?
I don’t see disability as a downfall or something negative. Personally, I believe everyone has different abilities, and different strengths and weaknesses. To me, this means you use the strengths and powers that are specific to you to accomplish whatever you want to achieve. No disease, disability, or condition defines a person. That said, I do want to acknowledge that many people are at different stages of living with and accepting their disability—and all those stages are valid. I am inspired to see people own and be proud of who they are and, in many cases, embrace their disability. And in fact, having a disability often creates greater empathy and understanding and causes you to view others in a different way, which is truly valuable and something to celebrate.
I-CREATE YOUTH is an organization that empowers, educates, and connects disabled youth through language in its various forms, from poetry to programming. We teach creative writing workshops, host fellowship and summer research programs, and curate monthly exhibitions featuring disabled changemakers, all in an effort to connect disabled youth and communicate their stories with the world. Learn more about us at icreateyouth.com.
To request for an interview, please email icreateyouth(at)gmail(dot)com