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What is the INvisible Project?

The INvisible Project is a magazine that aims to make invisible illnesses more visible to the outside. Each edition tells the story of ten people or families who live with an invisible illness and highlights the good, the bad and the ugly through pictures of their daily life. Each participant is in a different stage in their personal journey; some inspire us, others are still searching and there isn’t always a happy ending. That’s real life with a pain condition.

Migraine.com and the INvisible Project

The U.S. Pain Foundation is proud to present the INvisible Project: Migraine 3rd Edition. Migraine.com’s own Elizabeth Roberts-Zibbel and Migraine Diva, Jaime Sanders are included. They both openly share with our community through their articles, but their interviews for the magazine give an outside perspective of their amazing accomplishments and strength, both of which they are deserving of praise. 

Holly Baddour’s wildly successful piece, The Body’s Slow Leak, is also highlighted in the 3rd Edition. Migraine.com makes another contribution to the INvisible Project by sharing key data from the annual Migraine in America study. The four-page spread on CGRP inhibitor drugs was penned by Migraine.com’s newest addition, Shoshana LipsonBilly Dwyer (also a Migraine.com newbie) and his family were featured in the INvisible Project: Migraine 2nd Edition and Kerrie Smyres and I were included in the 1st Edition.

Diversity of participants

Participants in the 3rd Edition include teens such as Chase, a teen with cluster headache, and the Pushis Family whose son Robert’s chronic migraine disease spurred his younger sister Hailey to use migraine education as her platform in winning the title of Miss All-America City’s Oustanding Teen.

Two high-powered women, Melissa Kelly, Chief of Staff for a US Congressman and Nim Lalvani, Executive Director of the American Migraine Foundation, show you can have a successful career with chronic migraine.

Dr. Bert Vargas, a headache specialist who does not have migraine disease, and his wife Michele, who is chronic, share how their combined forces are making a difference in patient advocacy.

Elizabeth Arant is a migraine warrior with a rare form of headache disease and Tom Sayen shares his story of being misdiagnosed for 48 years, only recently discovering his migraine attacks are actually chronic cluster headache attacks.

Lastly, the heart-breaking and inspiring story of Danielle Byron Henry and the foundation her family has created in her honor.

The participants represent various headache diseases: hemiplegic migraine, cluster headache, idiopathic intracranial hypertension and episodic and chronic migraine. Their stories include perspectives from family members, caregivers and healthcare professionals. Their bravery in allowing the INvisible Project to tell their stories is one way in which they are advocating and reducing the stigma of headache diseases.

Resources

The magazine includes informational articles on topics such as clinical trials, behavioral treatments for migraine management, how to appeal insurance denials, information on CGRP inhibitor medications and the importance of stamping out stigma. Resources on non-profits dedicated to education and awareness, online communities, in-person support groups, policy and advocacy information, pediatric information, prominent writers/patient opinion leaders in the migraine, headache and cluster community. You can also find the full list of U.S. Pain Foundation’s initiatives and programs.

The importance of storytelling

I have had the privilege to be a contributing writer for all three Migraine Editions, most recently serving as the contributing editor for the 3rd Edition. Coordinating, collaborating and writing several pieces for the magazine has probably been one of the most challenging things I’ve accomplished. It was a great reminder to reach out for help and to delegate. Thanks especially to Michaela O’Connor, Amber Fonseca and Janet Jay from the U.S. Pain Foundation who wrote stories and articles

All this would not be possible without the direction and leadership of the Director of the INvisible Project, Nicole Hemmenway. “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. When people have something they can hold, it feels more real, more reliable, and it can be a strong source of hope,” says Nicole. I also hope that it inspires others to tell their stories and talk about more openly about our invisible illness.

The INvisible Project also covers other disease states. Since 2016, I’ve also contributed in various ways to Rheumatoid Arthritis, Medical Cannabis, Pediatric and Osteoarthritis/Chronic Low Back Pain Editions. After sharing my story for so many years, it’s an honor to tell the important stories of others living with various pain conditions. I now realize that anyone living with migraine, headache or cluster also belongs to a bigger community of those living with pain. While the diagnosis might not be the same, there are so many similarities in the struggles we all face.

Want a copy?

All 12 INvisible Project editions are available for download here. If you would like hard copies of the Migraine 3rd Edition, please email contact@uspainfoundation.org. We’ll be happy to send you one magazine, ten, 20 or even a box of 50, at no cost. This is one way that YOU can advocate by sharing with your doctor’s office or slipping one to a friend or family member who doesn’t really understand.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • glassmind
    2 months ago

    So wonderful to read of this project! Thabks for the information and link. And thank you to all the contributors!

  • Katie M. Golden moderator author
    2 months ago

    @glassmind – Thanks for taking interest in the INvisible Project. Writing for this magazine has been one of the most difficult and rewarding things I’ve ever done. I really hope that everyone can relate to at least one story or learn one thing.

    Please reach out via the link if you’re interested in receiving a copy.
    -Katie
    Migraine.com Moderator

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