TELL YOUR STORY THIS #MILLIONSMISSING
Telling your story for #MillionsMissing this year in 2026 could not be more important. This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is.
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We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve. There are major policy implications at play and we need all of your stories to help protect our healthcare, secure the research funding we desperately need, and so much more.
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There are many ways to tell your story and it is all helpful. Just be yourself and just know that if sharing your story brings up big feelings, you are not alone! Take your time. Be gentle with yourself.
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You can make a 2 minute (or less) video, write a post about an experience and share a photo, or come up with a creative and unique way to share your story through art. However you share is valid and helpful to our cause to lift up the stories to create real and lasting policy change.
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As a reminder, here is the storytelling toolkit with battery level recommendations.
See these 5 tips from Shalida, our Creative Arts and Community Manager, on how to tell your story, and share on the week of #MillionsMissing through writing, a short video reel, a selfie, and/or art.
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We have a few good resources from past #MillionsMissing years on How to tell your story easily and effectively:
TIPS ON HOW TO SHARE YOUR STORY THIS #MILLIONSMISSING
with Shalida Dobbins
Full Transcript:
I want to start by saying thank you to everyone who showed up for the Narrative Working Group workshops! It truly turned out amazing, and I’m so excited to hear the stories you’ll be sharing for Millions Missing.
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If you weren’t able to attend, that’s completely okay. I want to offer a few simple tips to help you tell your story in a way that feels authentic and manageable for you.
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First, be vulnerable. Allow yourself to be honest about your experiences and the struggles you face, why Medicaid matters to you, or what daily life looks like living with ME/CFS or Long COVID. Your truth is powerful, and it deserves to be heard.
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Second, be creative. This isn’t a homework assignment. There’s no single “right” way to do this. Whether you write, record, draw, or share in another format, choose what feels natural and doable for you.
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Third, remember that you are in charge. This is your story. No one else can tell it for you, reshape it, or take ownership of it. You decide what to share and how to share it.
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And finally, try having fun with the process. Writing can be such a freeing and meaningful experience. It’s a way to organize your thoughts, express yourself, and connect with others, especially those in positions of power who may not understand what you’re going through. Stories have the ability to move people in ways facts alone can’t.
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If you’re interested in sharing your story, I encourage you to checkout the Millions Missing toolkit. There are many ways to get involved, designed to meet you at whatever capacity you have. Whether you have the energy for something small or want to go all in!
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You can also sign on to the HHS letter we’re planning to send, or, if you’re able, join us in Washington, D.C. to be part of Millions Missing in person.
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Again, I’m so proud of what we created together, and I’m wishing you all the best as you move forward in sharing your stories.
Check out this training by Kirsten Farrell for last year's #MillionsMissing, and learn to tell your story in under a minute.
TELLING YOUR STORY IN UNDER A MINUTE
with Kirsten Farrell
Share your story on the Community story bank for use in advocacy through the year as well!
This #MillionsMissing, we are Frail and Furious, and we are mobilizing the community to educate the world about how serious and complex this disease truly is.