INvisible Project & Migraine Awareness
We spoke with Nicole Hemmenway, Vice President of the U.S. Pain Foundation, so she could tell us about the INvisible Project, and how they’re spreading awareness for migraine through this campaign.
What is the U.S. Pain Foundation and how does this organization support the migraine community?
Our founder and president, Paul Gileno, initially created U.S. Pain Foundation from his bedroom because he couldn’t find help or support for himself when he was at his lowest point. He was living with chronic pain after an accident that forced him to stop working, and was stuck in bed a lot of the time. He realized there wasn’t much support for people going through the same issues, so he created a small patient-centered group for his community in Connecticut.
But he saw a much larger need, so in 2011, U.S. Pain Foundation went from a small grassroots organization based in Connecticut to a national nonprofit dedicated to improving the lives of people living with chronic illnesses and pain. We all work together to empower, support, inform and advocate on behalf of patients – we want to help them find their way to redefine a “new normal”. And we try to increase societal awareness about chronic pain, ensuring patients’ rights are upheld and that people--including those with migraine disease--can access high-quality, effective pain care.
We offer many patient-centered programs, like the Pain Ambassador Network, a volunteer effort that helps people with chronic pain represent the organization in their communities across the country. Those volunteers are the face of our organization and lead our efforts to make changes to legislation that help those in pain.
Our “Take Control of Your Pain” events are really popular, too. They’re day-long seminars for patients to share their perspectives with others, and to talk to health care providers to discuss the latest advances in pain management and complementary therapies. We try to have topics that are pertinent to the pain community, and focus on disease-specific states like migraine, and treatment therapy options such as understanding over the counter (OTC) medications or learning more about medical cannabis.
Pain Medicine 411 (painmedicine411.org) is a site for people to learn more about taking pain medications and OTC medications safely and responsibly, and how to properly store in a safe place and discard them. It’s a great tool for people to find more information related to medication use.
We offer so many other programs as well, including websites that educate people about all the available medications and treatment options; major national legislative advocacy efforts; support groups and more -- too many to name here! Our website, uspainfoundation.org, is just overflowing with resources.
It is a priority of U.S. Pain to support disease-specific communities, including the migraine disease community. As many living with pain deal with co-morbidities, our goal is to share information and support with all so people are best educated. For those with migraine disease, we have in-depth information about the disease on our LearnAboutYourPain.com website, we created a migraine disease edition of the INvisible Project, and we plan to host an upcoming Take Control of Your Pain event on migraine disease. Plus we rely heavily on the active involvement of our ambassadors living with migraine to help us create information, spread knowledge about best practices, advocate for more specialists and more.
Make the invisible seen
What is the INvisible Project all about? What's the importance of holding this campaign?
The INvisible Project is the flagship program of the foundation. Our goal is to make visible the often-hidden challenges faced by people with chronic pain, and unveil the truth about what it means to live with pain and thrive despite it. We highlight real people and their stories in order to spread awareness about chronic illness and shed light on that which is invisible.
The biggest component of the project is the INvisible Project magazine, which is distributed to tens of thousands of patients, caregivers, and health care providers. This publication highlights stories and photos from real patients about their day-to-day lives. While we love working online, 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. It makes a strong impact to sit with a magazine and look at all the pictures of people you can relate to. I believe so strongly in the power of our voices. One voice can make a difference. When someone is dealing with chronic pain, for too long, they can feel defeated and become vulnerable. It can mean searching for someone who can hear you, listen to you, and validate your experiences. This project does that. It recognizes the journey you’re going through, acknowledges the small accomplishments you make along the way, and lets you know that despite the pain, you still can live a fulfilled life.
Why do you want to spread awareness? What do you feel people still don't understand about living with migraine?
I love this question! To be honest -- as a person who lives with a chronic illness, but does not have migraine -- I was shocked at how much I learned through working on our recent INvisible Project about migraine disease. For starters, I didn’t know there were headache specialists, and then was shocked to hear how few there are -- and how much they are needed.
Awareness is everything. Without awareness, I don’t think change happens. When living with an invisible illness, it’s hard for society to recognize the plight we’re living with. The magazine chips away at the misconceptions of what it’s like to live with migraine. It lets people know how difficult it is to access a headache specialist and lets the general public see to what it’s like to live with migraine.
The power of our words
It also never crossed my mind that using the term ‘migraines’ actually lessens the scope of the disease to those suffering. Reading Dr. Bill Young’s article on Migraine.com “Fighting Migraine with Words” was an ah-ha moment for me. He wrote the introduction to the INvisible Project: Migraine edition, which emphasizes how important it is to choose the correct terminology. Through the INvisible Project and the inspiring individuals who candidly shared their experiences, I am much more cognizant of not only the depth of the disease but also the importance of using words correctly.
A huge public misconception about the disease too is that ‘migraines are just a headache.’ As a society, we are quick to judge that which we cannot see. One of our intentions with this project is to spread more knowledge, which we hope leads to more compassion and a greater network of people fighting for further research and promising medical advancements. This is a disease that is devastating and doesn’t have medications specifically to treat migraine. There is hope for the medications in the pipeline that will really help people and lead to less pain.
The individuals featured in this magazine are open and raw and still so hopeful for the future. My main wish is for a new conversation and dialogue to start that addresses the real issues people with migraine, cluster headaches and all headache disorders face. That will lead to more treatment, and remove the feeling of hopelessness and isolation.
The INvisible Project was created to be a positive influencer in spreading awareness. It is the crux for all positive change. Migraine awareness is vital to improving care for those living with this disease. And I am so proud to be part of this project with an incredible team, amazing contributors and inspiring people who share their very personal stories.
Power in numbers
Who are you partnering with to help spread awareness?
I absolutely believe in networking with as many key stakeholders in the migraine community as possible in order to best serve those living with the disease. As you know, we are all working toward the same goal: spreading awareness to break down barriers and find better treatments. To do that successfully, we all need to support one another and collectively share resources. We have been working closely with Miles for Migraine, Migraine.com, Clusterbusters, National Headache Foundation, Chronic Migraine Awareness, Inc, and myMigraineTeam.
Some activities we have planned for Migraine Awareness Month include sharing a migraine fact each day and a quote a day from participants; posting videos created by expert Katie Golden; hosting a Twitter chat; participating at national conferences; sharing content on Migraine.com; distributing magazines at Miles for Migraine; and much, much more. It’s going to be a busy month!
But we aren’t stopping there! Just as we say during Pain Awareness Month that pain doesn’t happen one month a year, the same applies for those with migraine disease. We want to be a year-long voice for this community. The INvisible Project will be traveling to capitol buildings, national pain conferences (including PAINWeek), headache seminars, Take Control of Your Pain events, future Miles for Migraine races … and any other opportunity to spotlight the severity of migraine disease.
Would you like to receive your own copy of this magazines? Email: firstname.lastname@example.org.
Have you taken our Migraine In America Survey yet?